A Few Thoughts

This note from Jason Kander really hit home.   Though I have not served in the military I understand the stigma & bias surrounding PTSD.

In March,  I had what I thought were panic attacks surrounding a surgery being cancelled without my knowledge or consent.  Shortly after, I also realized I wasn’t sleeping well again.  I was waking up in a panic & couldn’t pinpoint why.  Even with a sleep aid any little thing would wake me up.

After talking with my mental health team, I was screened for PTSD.  I did indeed have it.  The incident that triggered it is hard to nail down.   It could be several events before transplant that set it off.  I waited until the most raw grief of my dad’s death had passed because I thought perhaps it would get better.  It didn’t.

Many transplant patients have or go on to develop PTSD but the education surrounding warning signs, (especially if you already have depression or anxiety) is not something that is really taught in depth in transplant patient education & discussions but I feel really needs to be.

PTSD is more common in the transplant community than many believe.

My therapist & psych nurse both explained to me that PTSD is different than panic because PTSD is a physiologic response, not a psychological one.   This made sense to me in several aspects.  Not only because my grounding techniques for my panic attacks weren’t working but it also explained many other issues I couldn’t figure out were happening.  For example, my blood pressure after that first hard core run in, was elevated significantly for weeks after.   My blood sugar was sometimes unstable.   Even if I wasn’t remembering what the night terrors were about, they were there & were disrupting my sleep.

Due to one of my nausea medications not being covered & being rather expensive with some unpleasant side effects, I switched to medical marijuana.

I will clarify this by stating that I talked with my transplant team, mental health team, & local doctors extensively before obtaining my card. They all agreed it was worth trying.  I use a tincture form & it helps my PTSD but also my nausea considerably.

It’s not a panacea or a cure but it’s something & it works more effectively than many nausea medications I’ve tried.  But I fully understand the fears of stigma & bias that Jason notes with disclosing PTSD because they are very real.

I had a very bad run-in with a staff member for a doctor’s office I tried to obtain certification from that was very frustrating.  I could have been blocked from accessing it had I not asked for help after this terribly biased experience.

I was very hesitant to come forward at all about either my diagnosis or treatment because people’s attitudes are so varied.  Some are very nasty & judgemental. Others perhaps are a bit more understanding because for them( or another loved one) they’ve tried medical marijuana or some variant of it for a medical issue that did not respond to other medications.

I will say this.  I do not agree with doctors & transplant centers that won’t allow compassionate use.  I understand why, but there are newer studies that show that medical marijuana might not be the threat to healing that it was thought it could be.

Definitely more research is needed. It’s a very individual choice but for me it has worked out.   I have had to take less nausea medication & it has improved my quality of life.  It costs roughly the same as I would pay for the synthetic form that wasn’t covered & is much more gentle.  I have a day time formulation & a night time formulation.  Both work very well to keep my nausea, anxiety, & PTSD in check.  My blood sugars have stayed fairly level too so I require less insulin.  It works well with my sleep medicine so I get more REM sleep (deeper sleep)  & sleep better overall.

Lately, some news reports have shown it might guard against transplant rejection.  Yet some centers will refuse to list or blacklist patients who have tried or used medical marijuana even to treat end stage pain or other issues.

One annoying issue for me is that I can’t use it out of state because of federal regulations & it’s classification right now.  Even with a card, I risk arrest in taking it somewhere where it is not legalized.

I also know I might run into issues with drug screenings or future employment but I will deal with that as it comes up.

Hopefully, that will change soon.

But I’m speaking about my experience in general terms so others can maybe feel more comfortable talking to their doctors about both of these subjects more honestly & out in open.

It’s hard for sure but it’s also hard to carry PTSD alone.  It’s still poorly understood by many but medical issues, sexual assault & harassment, or many other life changing or traumatic situations can serve as a catalyst even if you don’t have anxiety or depression.

I’m advocating that more transplant centers have a more open & honest approach to discussing medical marijuana with their patients instead of taking a punitive stance.  I’m glad I could have a honest discussion with all my health care teams about it because it made a huge difference.