a lack of lungs, the saga continues

by kaleidegirl

it is thursday. i’ve been here at the hospital since sunday evening. this particular trip started at my local ER. i should have called 911 but my husband got me there.

only a few steps had my oxygen saturation dropping to the low 50’s. for those who have no idea what that means, healthy people are usually at 95 or higher. i try to keep my oxygen up enough to stay above 90.

when your oxygen level is that low, you literally feel like you are drowning. it is painful. it is scary. the fear and anxiety make it all worse. all you can do is sit and try to take big breaths. just sit and try to relax your body as much as you can and take in all the air you can until the pain subsides.

the local ER did their thing and eventually i was transferred here to U of M where i am listed for my double lung transplant. due to my steroids being increased so much to try and improve my breathing, my status on the list is on hold. they started tapering it down today and plan to have me relisted by Saturday. the steroids aren’t helping and i can’t get my lungs if i’m not active on the list. my score will be higher and that will shorten my wait.

the real thing keeping me here is my oxygen needs. i simply need too much for what can be provided at home. obviously it has improved somewhat since Sunday but not for the last couple days. i’ve hit a plateau and it may not improve. i may be here waiting for my lungs.

it will suck. it could be hours, days, weeks, months. but. it will surely be sooner than if i were home and stable with a lower score.

as much as it will suck, i am OK with this plan. if that is how things go. i feel like this will have me up and back to living so much sooner and in plenty of time to see my baby girl get married. no oxygen tanks in tow. no tubing ruining photos on such a special day.

so i’m optimistic but trying to just go with it. i’m on this ride so i’m going to just buckle up and ride.

i’ll keep updating here. i might blog every day and it might be boring and repetitive. it might help me get through the days. i’m trying to keep myself occupied as much as i can. i’m trying to be as productive as i can.

i can have visitors. i don’t need anything. my husband says he is coming saturday and he will bring any other little things i need along with clean clothes.

i’m a strict diet so i won’t be asking you to smuggle in ben and jerry’s  or some shit. well, a snobby coffee once in awhile might be nice. i just have to let them know about it for my dietitian.

my “job” in all this is to walk as much as i can and stay active and strong so i can recover like a pro when i get those lungs.