“Accidentally on purpose…”

the attention just encourages her..

Month: July, 2017

my lungs suck at being lungs

today is my 11th day in the hospital. i attempted to sleep in because i am NPO, nothing by mouth, because of a test they are doing today. at some point. they have to just fit me in when they can. they said the most notice they can give me is about half hour. it is annoying because i haven’t had anything to eat or drink since about 10pm last night. just sips of water to take meds. also not knowing when bothers me because my daughter is coming to see me. she says she’s bringing her laptop so she won’t be bored if she has to wait for me.

the drs ordered these tests in the hopes that the results will increase my LAS. this would help me get my call sooner. it is sort of like bumping me up on the list. even though the list is more like a pool.

i’ve already gotten one test done. the breathing test and 6 minute walk. the breathing test show my lung function and the walk is to be sure i can walk 450 feet in 6 minutes. it is a requirement for being on the list. i wasn’t worried about the walk. i have been walking something like 3000 feet every day 2 to 3 times a day. granted i need a lot of oxygen and have to walk slow but my body is staying strong and that is what matters.

the tech who did my testing is one of my favorites. she’s very nice and funny and we get along well. she calls me the queen of darkness or something and she was very amused to learn that i am afraid of the dark and very photosensitive. she made it easier to deal with the difficulty of the test even if she was a brat. 🙂

in order to get to the pulmonary function lab for my testing i had a special transport team called SWAT, “Specialized Workforce for Acute Transport”. they are specially trained nurses and EMT’s. there were 3 of them and they loaded me up on a stretcher with all of my monitoring equipment and made sure i was safe. i felt weird being on a stretcher because i am able to walk, albeit with lots of oxygen, but still, i can walk.

the other test i’m waiting on is the right heart catheter test. they will go in through my neck and test/measure the pressure in my heart to see if my pulmonary hypertension has worsened. they are hoping this test will also help them raise my score. no idea when this will happen and i’m seriously still wanting coffee. it is too late for caffeine though of course. i’m a little anxious about this test. i’ve done it once before and it is a bit uncomfortable and they way they go in through my neck is a little jarring. i have my head turned but i can still see the activity around me on that side in my periphery. i also needed extra sedation last time which i hope doesn’t happen again. I’m hoping Mary will get here before i go and will come with me. she can use her laptop anywhere and it would be nice to have someone with me right up until i go back and right away when its done.  i know Chris wishes he were here. he tries to be with me for tests like this. but he’s gotta work as much as he can because my lungs are sure to come sooner than later.

so today has been a weird day. morning was a bit busy in here off and on. drs and making plans for my tests and all of that.

everyday it seems the big picture plan changes. one day its “no way you are going home right now” and the next its “maybe we’ll get you home tomorrow”. i don’t get my hopes up and i’m technically OK with staying here until i get my lungs. my breathing is still very bad and its a bit scary when i accidentally do a little too much. i use the non-rebreather mask at 15L just to walk a few steps to the toilet or to my bed. i’m on 8L with the high flow nasal cannula at rest but if i talk too much or move around too much my sats drop into the 80’s. so i don’t know why they are ok with me at 8 rather than 10.  they are the drs though so i will keep doing what i am supposed to and keep them up to date on my breathing.

i just realized the only walking i’ve done today was my 6 minute walk test. so even though i’m in heap big pain, i need to get out there and walk.





another day, same view

i woke up early today and i guess since i had to go to the bathroom right away i decided to get in my chair and order up my coffee.

so here i am feeling like it is later than it is. not by much though. just waiting on the drs. they are outside my door. they are gonna chat about me for a bit out there and then come in here and tell me i’m not going home soon like we were all hoping.

they have been lowering my oxygen to see how i do and i thought i was doing ‘ok’ but then i went to bathroom and fixed up my blankets in my chair and down went my sats. i was lightheaded and had dropped into the low 60’s just as one of the transplant drs came in.

apparently my chart said i might go home today. that isn’t happening now.

~~drs came and went~~

the transplant team had their meeting today where they discuss all their cases and they want to do some tests again to see if they can get my score up more. so they are pretty aggressively trying to get me those lungs.

~~and then~~

pysical therapy was just here and we did some exercise and a walk and some stairs. it was hard. it was upsetting. just when i was thinking i might be doing a little better i get hit over and over with the realization that i’m really not.

i realized i haven’t been thinking much about the surgery itself. just about what i want to do after, being able to breathe. its a little jarring when i find myself imagining getting the call. i almost feel like i should be really visualizing that more. like i could will it to happen sooner. yes, i know that is silly.

anyway at some point today there will be a special transport team taking me down to the pulmonary fuction test lab for breathing tests and then some time this week i have another heart cath test. the heart cath involves them going in through my neck to measure the pressure in my heart. they are doing this again to see if the pulmonary hypertension that seems to have started about a year ago has gotten worse. if my breathing tests are worse and the hypertension is as well these things will increase my score.

i’m trying not to do too much today aside from my walks and meals. my dear friend Carolyn is coming to do my hair which is awesome mostly because i haven’t seen her since she met me here Sunday with my bag. i mean, we all know i hate not having my dreads in but really looking forward to seeing her.


waiting, waiting, waiting

i wasn’t sure i would see any drs today seeing as it is Sunday and my breathing is the same as yesterday but they just came through.

they stopped my 4x a day glucose checks because my sugar has been fine and will stay that way without the steroids affecting it. they are giving me a break from the Lasix, a diuretic they’ve been giving me to fight off my fluid retention. it will be nice to not have to pee so much more. ah, the little things.

i lost a pound. so that is 9 total since i last weighed myself at home. i think that was last Friday.  the cardiac diet they have me on seems to really be working. i’m going to try and walk even more today. i’m sure i will also see physical therapy again this week and i plan to ask them about hand weights but i think they just have resistance bands.

i’ve asked about “snobby coffee” because i’m craving it and people have been offering to bring me some. the drs think its funny that i call it that and are totally cool with me having it.


i learned yesterday that i have pulmonary hypertension. i guess that is the cause of my fluid retention issue. i have no idea what it is and will be reading up a bit on it soon. i know it is very common for people with lung disease.

my LAS (lung allocation score) has gone up from 36 to 41.7. i don’t get any special priority because of being in the hospital. of course logically i am sure to have a shorter wait while here compared to being stable enough to be at home. i’m waiting on the stars to align and thats all i can do.

i think thats it.

i’m just trying to keep busy and not go crazy.

the little things are enormous in times like these

i warned you these blog updates might get repetitive and boring but i also explained that they help me clear my head and keep a good record and occupy a little extra time in these long days.

i’ve been having issues with night sweats. i get very clammy and gross but also quite cold. its very uncomfortable and very gross honestly. i had them turn down the temp in here yesterday and after sitting for awhile away from the blankets i started to feel better. then i got washed up and into fresh clothes and feel even better still. i found some bobby pins to put my hair up a bit and generally just feel much more comfortable.

i may get to go outside for a bit today. maybe. i’m going to have my lunch soon here and then ask about that. i know it is stupid hot out and i am ridiculously photosensitive but damn. i need fresh air. i have them keep my door and curtain shut so i can keep my music going and use the bathroom whenever i need to without having to wait for someone to come close the curtain. it also eliminates the feeling of living in a fish bowl. i mean i’m already the goth girl being walked like a dog three times a day. the staff is clearly talking about me. my nurse mentioned me “having a crazy experience” getting here. i had no idea what she was talking about. then one of the drs asked about my “boyfriend the chef”. i said i had a husband and he is a great cook but he is not a professional chef or known publicly for it or anything. i don’t know where this stuff is coming from. i don’t mind, like i’m not offended or anything i’m just confused but don’t want to ask about it. once Chris shows up tomorrow they will have concrete gossip for the remainder of my stay on the floor. he rarely has to even ask for directions to my room. they see him and just know he’s mine. they assume he is a biker. they often think he did all my tattoos. it is amusing. not just because neither of those things are remotely true but because of what is true. man i miss him. i can’t wait to finally see him. we didn’t have much alone time the week before all this went down so the distance is a little sharper.

its friday so things will be slow and boring. the drs came around like they do. i’ve seen the same one every day for a few days now and she said she’d be the one i see most for the next 2 weeks. nothing has really changed. my condition, my oxygen needs, my labs. the plan is the same. will be down to 20mg of prednisone tomorrow and once she comes through to see me and things are still the same she will put in the call to re activate my status on the waiting list. the only other thing they are doing is giving me Lasix to combat any fluid on my lungs. my days for the time being consist of taking walks and breathing on this machine.
~~i have a wiki link about said machine that i will link at the end of this. i’ve had a lot of people asking about it. it is not something that can go with me. needing it is the reason i cannot go home.~~

my breathing will either improve enough for me to get the oxygen i need with my home set up or it won’t and i will be here until i get the call. i might stay at this plateau i’ve been at at my current flow rate until that happens or maybe get down a little but not enough or even get worse. there is no way to know.

the wait here will be the same as home. the same stars have to align to get the right match. the biggest difference is that my score will be higher here than if i stabilized enough to go home. logically i will get the call much sooner if i am here in this state.

i’m basically OK with this because i am eager to get my life back and willing to do whatever i have to. suffer the boredom. be away from my fantastic husband. miss out on dates with my girl. worrying about my pup being alone more than usual and probably so confused about where i have gone. i might be stuck here on our anniversary again and Halloween and maybe even the rest of the holidays. who fucking knows. but i will stick it out the best i can and hope that call comes soon.

hell, i could suddenly start improving and be home next week or something.

my life is so completely up in the air it is hard to wrap my brain around sometimes.

if you have questions about any of this process i am happy to answer to the best of my ability. i don’t mind talking about it. it doesn’t upset me.

if you want to call, do call. obviously i may be unable to answer. routine in rare here, there is no way to say what a “good time to call” is.

if you want to video chat, i’m game. just have to work out whatever method is best for us.

if you want to visit that would be lovely. just give me a heads up if possible. i get myself cleaned up and dressed as soon as i’ve seen the drs in the morning. if i do it sooner i run the risk of not seeing them unless they happen to be able to come around again.

if you read this far i hope it wasn’t too repetitive. i’ll start re-reading previous posts to be sure i’m not just saying the exact same shit every single day.

~~~here is that wiki link about this machine keeping me alive. it is actually somewhat new technology. still a lot of testing going on to really understand the benefits and risks and uses.





a lack of lungs, the saga continues

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.

Despite your comforting sounds

I’m really struggling with my illness. With the day to day of my serious limitations. With the pain of being unable to breathe.

It’s been especially bad, progressively bad, the last couple weeks. I’m avoiding a call to the Dr on the hope that it’s just a side effect of tapering my prednisone burst too fast. We’ve dealt with that before. I’m ok if I just rest. Try not to move too fast when I get up.

It’s no way to live and it hurts my chances of a speedy recovery if I got the call right now. But. I’m not so out of shape that I am overly concerned about that. My body is strong. I’m confident that I will be able to get up and walk when the time comes. When I can breathe.

While I wait though, while I struggle to catch my breath and the pain makes me cry… I’m fighting to keep fighting, but it’s so hard, it’s so very hard. I feel like I’m losing the battle and no one understands. How could they? They can’t feel the pain of not being able to breathe. The feeling of drowning on dry land. The sheer terror.

It’s lonely here in my fear. When I’m gasping for air the only thing that can save me is finally being able to breathe. Out of guilt I will try to hide my pain. I will pretend I’m ok even if I’m not.

I don’t care how depressing this is. No, that’s not true, I do care, I do feel bad, I should keep this to myself and I’m sorry I’m not. I’m sorry for the honesty that might upset you.

I just feel compelled to be honest. Maybe I’m hoping that the sharing of pain is the halving of pain.