Recovering from a Kidney Stone and Immunotherapy Changes

Don’t even know how to describe what its like to have a kidney stone, but also I have no idea how to explain the pain that comes after surgery.  Having a laser and camera jammed up your peehole is not a pleasant experience to say the least.

I got to the urology center here in Denver at 9am, pre-surgical jitters as usual.  Nurse went through the usual motions, medical history, allergies, etc.  Got my IV put in and was started on fluids.  Soon after I was met by the anethesiologist who called me the night before.  I was hoping to get some versed sooner rather than later, but that didn’t happen.  10:30am came to be, and the surgeon was running behind.  To my surprise, he was much better than the Dr I had originally met.  He spent about 15 minutes talking to me, and assured me that things would get taken care of.  Soon after, I was wheeled into the operating room which was literally outside my staging room, just had to pop through a series of doors.  Thats when they gave me the versed, I guess better than ever.  As I positioned myself on the table the versed started to kick in.  Versed is an amazing drug.  If you are ever in need of surgery, just ask for it.  It is instrumental.  All I remember is the anesthesiologist hovering overhead with the mask and more stuff to put in my IV.

About an hour later I woke up to what I can clearly describe as a fire down below.  The doctor met me soon after awakening, and told me that they sucessfully removed a kidney stone that was calcium oxalate based measuring a little over 6mm x  3mm.  Holy fuck this hurt even worse.  The only thing they had for pain meds was oxycontin… no morphine.  God this was so painful.  The car ride home was absolutely brutal.  I could feel every single bump in the road.  Everything hurt at this point.  As I sat in my friends car looking like I just got ramrodded (which I did), I couldn’t find a comforting position.

It felt so fucking painful to walk, to sit, to stand.  Jesus I was miserable.  I couldn’t get comfortable.  Once back to my apartment, the feeling of I gotta pee was constant.  I was roaming around the apartment again trying to find comfort in something / anything.  The oxy they gave me at the center did absolutely nothing.  Dove back into my stash of dilaudid, and the pain was less within 15 minutes.

The feeling of I had to pee never went away for about the first day.  Everytime I would pee?  Blood.  Small particles / leftovers from surgery kept coming out.  It was painful to pee, or painful to hold it.  It didn’t matter.  It was painful no matter what.

The coming days things slowly started to get better.  Peeing less blood, and less pain.  It still hurts somewhat, but I am much better than I was last week.

I unfortunately had to put off getting a tooth pulled due to this.  So I still have to address that.  Yesterday I went to go get my mouth molded again (yes I gag easy).  In about 3-4 weeks I will have the upper denture made (allergen free) and have the remaining 6 teeth removed so that I can start to heal from the damage the infection laid out the past 2 years.  I am over the whole fact that I am 40, and now have dentures.  None of this was my fault, and it really could not have been prevented by any measure.

I just wish that the doctors listened to me sooner.  Soon after my sinus surgery, I had another cyst/pustule form on my neck.  I went to a dermatologist to lance it, and culture it.  And there it was again… coagulase negative staph….  This shit is systemic at this point.  The dermo sent me home with 10 days of minocycline, which I had finished the day of the surgery.  From a previous treatment, I still had leftover doxycycline, which the report came back as the bacteria being susceptable to tetracyclines, so I am hopeful that this is keeping this shit gone.  I have about 7 days left of doxycycline.

On the immune front, between the surgeries, cultures, and the kidney stone, I met with my immunologist who has been so goddamn helpful and a literal godsend to me.  If it wasn’t for his help, and advocation, I probably wouldn’t be typing this.  Our usual meetup was done over video chat.  In this day and age, going to the doctors office outside of not needing a procedure is the new norm, and I am not gonna complain.  Our previous meeting we spoke at length about switching up my immune therapy.

Currently I am on 60g of Octagam IVIg administered every 3 weeks.  But per our last conversation, I told him that I needed to stop getting poked so goddamn much.  My arms are constantly bruised.  Between the infusions, and the ER visits, and the surgeries…. I seriously look like a fucking heroine addict.  SCIg.  Same therapy.  Immuglobulin.  But instead of IV, its subcutaneous.  Similar to doing insulin (but a shitload more).  Next friday will be my last IVIg treatment.  This will boost my IgG to around 1200, the following week I will start SCIg.  From what we discussed its going to be between two brands.  Cutaquig is the octapharma version of IG in subcutaneos form.  Its a newer SCIg therapy, as octagam was only available via IV.  The other brand being Cuvitru.  I am familiar with that name.

I spoke to the lady who helped me get the insurance approvals yesterday.  Explained the whole process (which I had already researched).  For the record, the IDF Community is extremely helpful with information regarding PI.  Therapies, support for those who have it, and help for family/friends who can better educate themselves about it.  So I will be doing supervised SCIg for the next 2-3 weeks.  I will receive training on how to administer the SCIg to myself.  For the curious, SCIg typically has 2-4 infusion sites.  Those sites can be in the tummy, inner theigh, or arms.  From what we discussed, I will require an SCIg product of 16%-20% of humoral replacement weekly, which per my dose of IVIg now, calculates out to 20g of SCIg weekly.  From what I have read, the infusion will take around 2 hours to do.  But the beautiful part here, is that I can do this at home.

Last week when I had the kidney stone, since I had stepped into a hospital, the infusion center REQUIRED me to go get a COVID-19 test.  But I had to drive way the hell up to Thornton to get the rapid antibody blood test, and the nasal swab.  As expected I was negative, but seeing as how I am still having to visit the ER’s, and still have issues.  Having to do a COVID test more than once is seriously inconvienent.

So now with SCIg, I won’t have to leave the house.  The meds, and tubing/needles/pump will all be here with me at home.  I will have nursing support should I run into issues, however, this will not make my PI feel like a burden anymore.  I’ll be honest.  Doing IVIg every 3 weeks which takes about 4 hours to infuse (during the day) sucks.  Its a timesuck.  I lose a day at work.  Its just inconvienent.  With SCIg.  I can now just have a day where I have to just sit for 2 hours and self-administer.  What makes it even better, is I’ll now qualify for co-pay assistance which is a HUGE help.

For those who dont know, Ig products require humans.  It cannot be synthasized.  They have to have about 5,000 to 14,000 plasma donors to create a batch of Ig treatments (IV or SC).  So this shit is seriously expensive.  From what I was seeing, to get my IVIg done at a private center, was costing insurance about $13k per treatment.  Yes you read that right.  Since I have to have that every 3 weeks, it costs about $225k on a yearly basis to keep my immune system up to par.  With SC, its much less.  Its realistically just the product, needs, tubing, syringes, and a pump.  I’ll see what gets billed to insurance for my SCIg, I know that it will be considerably less, but more frequent.  From what I’ve read, it costs about $3k for a 20g bottle.  So if that’s the case, this will cost about $156k yearly.

Thats enough rambling for now.