i had a horrible nightmare experience at U of M on Friday.
my anxiety has gotten out of control. if you have never had anxiety you might not understand. it has been physically painful. i’ve been unable to eat or sleep for the most part. i had saltines and couple pieces of cheese for dinner one night and have maybe been sleeping 2 hours a night. my stomach knots and turns with nausea.
it is hell basically and was an all the time thing. not just for a little while or only when my mind went to dark scary places. it was constant. it would spike even worse than usual when i couldn’t block out the fears and worries. will i make it through the transplant? will i have chronic rejection? will i ever even get the call? why is this happening to me? i can’t leave my daughter. i can’t leave my husband. will new lungs be wasted on me?
sometimes there was acceptance. i had no real control. this is happening.
that eventually feels too much like giving up. then the guilt sets in and the panic comes rushing back.
protecting everyone else from the fact that i am in fact dying leaves me feeling a bit alone in all this. i’m not being dramatic. without the transplant my prognosis is grim and plenty can go wrong after the transplant. the average survival rates aren’t great either way. i try not to think of those numbers though. just numbers.
so every day i was getting out of bed in a panic. unable to quiet these thoughts.
Friday morning i messaged my transplant dr about how bad my anxiety was. later on i got a call from a nurse in her office. something had to be done. for several hours i was on the phone with her off and on. one plan after another until they finally settled on something.
this back and forth nonsense only got worse when i got to the hospital. i was told to go to the psych ER so i did. then i was told i was supposed to be admitted to the 6th floor so they wheeled me up there. they said no, i was supposed to be in the psych ER first. so i was wheeled back down to the psych ER. none of this was helping me. my anxiety was getting worse by the minute. there was a lot of confusion and calls made and calls waited for until they finally told me i was going to stay in the psych ER and would see a dr in a few hours. at this point i lost it.i couldn’t even leave because of the winter storm. i was fucked. they took me to a room in the back to fucking search me. they tried to take my stuff. i raised a fucking ruckus. this was unacceptable. i was going to get an attorney. in the end they didn’t search me. they put me in a consultation room and gave me my stuff back. i couldn’t stop crying. a social worker came to talk to me and it was clear they weren’t going to help me and i was stuck there for who knows how many hours and she says maybe i should be admitted to the psych ward. she’s offering to have a stretcher brought in so i can sleep. she’s asking if i want anything to eat. if i could eat or sleep i wouldn’t be there. what the actual fuck. suddenly i was having awful chest pain and rushed over to the medical ER. i’m freaking out inside my head thinking how this is just going to delay everything even more and how will i survive this.
the ER was chaos. i can’t believe i was taken to a room as soon as i was. the room was quiet and the nurse was kind and the dr who came to see me saved me. i explained everything and she saw it as cruel joke. she gave me half a klonopin to ease my anxiety despite the transplant drs not wanting me to take benzos. she wanted to help me while she worked on her plan to get me admitted so i could get help. the klonopin helped a little. i even almost dozed off but my body kept twitching me awake. i was that tense and wound up. i was eventually admitted and taken to a room on the 6th floor.
i only slept maybe 2 hours as per the usual these days. i tried to eat. i was told i might not see the psych dr until Monday. i panicked, sure that i would miss Christmas.
the psych dr came earlier than i expected even after finding out he was in fact there and would be coming to see me. they had a recommendation from the transplant psychiatrist to try Seroquel. this drug is notoriously awful but it is supposedly very helpful for people in my situation. transplant patients who can’t have the go to benzos for anxiety. i’d had a bad experience with Seroquel but it was decided that maybe that wasn’t the med itself but irresponsible dosing. my previous psych dr upped my dosage from 100mg a day to 400mg. it went badly and i ended up in the ER and stopped taking it and soon found a new psych dr. so this dr says we should try it again at smaller doses through the day and a bit extra at night for sleep. if i was open to this. it was really my only option. it was either that or wait for the transplant dr who would want to do the same thing and probably not have a better idea. who knows when that would happen. the soonest outpatient appt was January 17th. i couldn’t wait that long. now that appt is my follow up.
they let me go home. there was no reason to keep me there when just being there was extra anxiety. i would be better off at home.so they held off on the first dose, i would start it at home. they didn’t want me falling asleep at the wheel. good thing cuz after i got home i showered, ate some bread took the Seroquel and promptly passed out in the recliner. my husband woke me at bedtime and i took my night meds, including the higher dose of Seroquel and i slept fairly well. still woke up a lot but got some real sleep. the morning panic came back but it went away after i took my morning dose.
this stuff was working. i was going to get my life back.
we had lunch plans with friends and we were able to keep those plans and i ate tons of sushi. making up for not eating at least a week.
the anxiety is still there, but it isn’t crippling me. it isn’t painful. the idea of going out by myself is still a bit daunting so i am taking it easy and slowly getting back to my regular routine.
my status on the transplant list is “on hold” until this anxiety is under control. i was told this when i was finally admitted. i’m ok with this. i was going to have my status held over the weekend for christmas anyway so i will just call after that and find out how to activate my status again. i’m hoping that by then this anxiety will be dealt with and managed. the way i see it, i will get my lungs when i am meant to.
so i’m trying to put my life back together. i’m doing my yoga. i’m putting on make up when i go out. i’m going to try and see people again. i’m going slow but i’m going.