“Accidentally on purpose…”

the attention just encourages her..

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.

yay!

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.

https://en.wikipedia.org/wiki/Heated_humidified_high-flow_therapy

 

 

 

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.

‘i will let this monument represent a moment of my life’

its been about 3 months since my last post.

i’ve been on the transplant list about 7 months. i know that isn’t a long time but i’m getting quite impatient. i’m less and less worried about the surgery as i find myself getting stronger every day. despite needing a considerable amount of oxygen to exercise. i’m more concerned about how long i will have to keep waiting.  there is a certain amount of guilt along with this impatience but i fight that off the best i can.

needing so much oxygen to go out and do anything and the need to take so many tanks has become stressful. because of the fact that i need it while at rest i have to take even more oxygen with me and its a dangerous game of chance when i’m not aware of how long i’ll be out. i think that for the majority of time that i have been sick i have normally been able to sit in room air while at rest. that made it very easy to conserve oxygen while i was out. now i sometimes can’t even get away with turning down below 6L. i will start to cough and have to turn it back up. this creates a very constant reminder of how sick i am.

so i am eager to get new lungs and get back to life. life without the ball and chain of oxygen tanks and 50 feet of tubing all over the house. life without the pain of being short of breath. which is a new thing, the pain that is. sometimes even with high amounts of oxygen for exercise and cleaning i will have to stop and rest. for quite awhile. struggling to catch my breath. pain in my chest and panic in my brain.

for the most part i have done OK at taking care of myself. i try so hard to follow my diet and i exercise every day. except for the weekends when i tend to binge and either do a half assed workout or not at all. every bad habit surfaces during the laziness of the weekend. i did better this past weekend and i need to do even better from now on. i want to lose at least 10lbs by the 28th when i see my transplant dr for my 3 month follow up. according to my scale i have lost body fat but went from losing a lb each day to gaining a lb each day the last 2 days.

so i have to try harder. i have to work harder. i exercise more and more each day. i went from 200 crunches a day to 375. i use 5lb ankle weights instead of just 1lb. i’m going to add more poses from my DDPYoga program today. i’m pushing myself as much as my oxygen will allow.

every time i fall i get back up. i will just have to keep getting back up until i have disciplined myself not to fall anymore. or at least not fall so far.

news on the radio happy birthday, happy birthday

so yesterday was my birthday. i’m 40 now. i know some lament this milestone event. i know i used to. however; every birthday is a victory now, especially this one. i had a really great day. a great weekend. my husband made a wonderful steak dinner and we had some wine and watched some music dvd’s like we used to back before we had a big fun basement with a pool table. it was pretty nice. like going on a picnic instead of a fancy restaurant. (that comes later in this post)  i got a call from my best friend singing my favorite birthday song, the song she posts on my FB page every year on my birthday. it was pure love. i slept in on my birthday and then went with my husband to pick up the adorable little birthday cake he had made.

*have you ever seen such an adorable fucking cake?*

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i had some cake for lunch. breaking lent and totally blowing off my diet. it was a lovely little indulgence. later on i got fancied up as fuck for a nice dinner at this awesome hibachi grill. lots of my favorite people were there and it was tons of fun. i didn’t anticipate the element of danger in going to a place like that with a huge tank of oxygen but all is well and i didn’t blow up the place.

*fancy*

20170312_153340

*fire*

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*a fucking ice cream sundae in a pineapple boat*

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i do wish i had been able to get around and talk to people more and i wish my daughter could have gone. not just because i wanna see my girl all the time but i know she would have loved it. i told her she needs to go sometime.

i got some real nice gifts. i was told which pet they were each from. surprisingly my husbands cat Bellatrix got me a very nice fire opal claddagh ring. she never used to like me very much but she seems to be warming up to me finally. its been nearly 9 years we’ve had her. i also got a balloon which Siobhan was terrified of which amused the fuck out of us. there is video. its adorably hilarious.

*my claddagh stacks nicely with my mother’s ring*

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i had more cake after i recovered from all of the awesome food at Ukai. the frosting was a bit too much so i just kind of dug under the frosting for the actual cake.

*cake for one*

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i then treated myself to a full nights sleep and i’m back to my diet and my yoga and lent today.

i’m 40.

and that’s ok

this is my life. don’t buy this ticket. this ride sucks.

i haven’t been getting much enjoyment out of my new hobbies recently. i did attempt to do a decent winged liner about three times yesterday. i have these stencils a friend gave me and i had some new liquid liner. i was not successful and just put stuff away rather than putting on any make up. i’ve got most of the songs for my next mix gathered up but haven’t worked on it hardly at all. i’m reading a book my friend wrote and giving editing suggestions as i go but i can only read so much at a time on the computer and i think even the day to day breaks are making it hard to keep the story straight.

if you haven’t noticed yet, this will be a whiny woe-is-me post.

there are things i’m clearly not allowed to say or talk about. i have all of one person in my life who understands at all what i am going through with this terminal illness thing that has become my life. i have a friend who has been through this and come out the other side with her new lungs but i feel that nagging guilt when the taboo things slip out. she’s pretty awesome and i’m certain if it weren’t for the distance between us we would be hanging out all the time. still. i don’t want to be that person you barely know always saying what no one wants to hear.

i’m going through what i hope is just a temporary set back. a little over a week ago i was barely needing oxygen. well, i may have needed more than i was using if i constantly watched my numbers with my oximeter but i used what i felt i needed, i felt good and i was able to comfortably go out and about with small tanks and they lasted a good while. then at rehab one day i noticed what i was using was not quite enough. i felt it and saw it on paper as i recorded my numbers. it was subtle. after a couple days i told my husband. i don’t like to worry him for no reason. it might have just been a bad day. after a couple more days i was turning up my oxygen at home but the machine i had only went to 5 liters so when i was using that much and my numbers were not where they should have been i started to worry a little. i did all the things i’m supposed to do in these situations. i worried something was wrong, that my illness was progressing. then there was a nightmare game of please-give-me-the-equipment-i-need to meet my oxygen needs. it was the worst game ever and i almost gave up and just resigned myself to adapting until things improved but that idea just made me even more anxious. in between phases of panic i reminded myself that my family dr cleared me. he saw no sign of infection and my x ray was unchanged. nothing was clearly and visibly wrong aside from needing more oxygen.

yesterday things were finally dealt with. they brought me the bigger machine i needed and took away the home fill system i had been using and replaced my small tanks with big huge ones that i need a cart to roll around when i go out. it was a sad and depressing thing for me. it feels a little like failure for me when this happens. maybe i didn’t exercise enough. maybe i cheated on my diet more than i should have. maybe i wasn’t using enough oxygen and that was the cause. i always feel like i must have something wrong. my far off friend had just very recently told me to be sure to “live it up” while i was doing so well. did i? or did i take that ‘good health’ for granted?

i absolutely hate using these large tanks. the cart is difficult to load in the car, its heavy and awkward and it wears me out for a minute and slows me down. being slowed down makes me feel like such a pain in the ass when i’m out with my husband. he has to wait for me to lug the thing into the car and get my seat belt on before he can start driving. then the reverse process before we can get out of the car. i rush and then struggle to catch my breath and then we get in the store and we have to put this huge ass tank-cart-thing in the shopping cart. it takes up so much space and by the time we get to the checkout the cart is overflowing.

yes i am whining about this relatively minor inconvenience that other people in my situation would be grateful to be in. they need even more oxygen. a cart that holds two of these huge tanks and extra tanks in the car with them when they go out or they need so much they can barely go do anything. they need much more even when just sitting doing nothing. they have to deal with the discomfort of so much air rushing in through the cannula in their nose. people in my situation are turned away and not able to even get a transplant. they don’t have enough emotional/physical support to get through it or they are too sick or too old or they can’t get their weight down or they can’t afford it. they don’t even have the hope of a second chance.

i feel so much sadness for these people. i know i am fortunate and i should be grateful and i am, i truly am.

but this shit sucks. so often i find myself dealing with all of this oxygen tubing and just wanting to cry. i don’t. usually. but i have those moments where i become far too aware of just how sick i am. i already struggle to get a decent amount of sleep but when i fall back like this my anxiety jumps and evening wears on and my anxiety tells me i’m not gonna sleep. i’m going to toss and turn in a panic that i’m dying faster all of a sudden. what if i never get back to where i can use those small tanks again?  what if it gets worse and my drs freak out and make me go to the hospital? what if i never get the call? i fight back the tears. i push away the scary thoughts. i try to push away the guilt.

then there are the things i can’t say. the things i’m not allowed to talk about. resulting in isolation and being trapped alone with my fears and worries.

i want and try to protect everyone from the sad facts of my illness but i’m just not that tough, i’m not that strong, i’m not that brave. it is strange for me when people say that i am. people say i’m inspiring. they say i look really good. i’m not. i’m none of these things.

i’m scared.

i’m lonely.

i’m overcome with guilt.

turn around bright eyes

mascara!!

a shorter post because i didn’t try as hard to find good mascara like i did with lipstick.

Cover Girl

“Super Sizer Fiber” mascara was interesting because it actually deposits fibers on to your lashes. i basically failed at application of this product or its just a clumpy awful mess all on its own. i was curious about this because i don’t have much lash to get excited about. i hope this would create the illusion of false lashes. nope. just a mess. might have potential.

https://www.covergirl.com/beauty-products/eye-makeup/mascara/super-sizer-fiber-mascara

L’oreal

this is one my husband got me for xmas last year. i think i showed interest in it at some point and he remembered. he’s great like that. he can shop for me better than i can for him. he just somehow remembers every little thing i look twice at. so. this stuff is purposely clumpy to create that bold anime look. it was fun at first but just not for me. so if you like that look this might be for you. it really does do what it claims. i can’t remember if i had issues with smudging or anything like that. i mean its meant to be a bit clumpy and such. let me know if you try this out and what you think.

http://www.lorealparisusa.com/products/makeup/eye/mascara/voluminous-miss-manga-black-angel.aspx?shade=386-Extra-Black

Milani

this was my go to for awhile. just a nice basic mascara. i never really layered it enough. it was my favorite until i found my real favorite. i don’t have a link for this. either i have the brand wrong or it isn’t available anymore. i know, this review is kind of a fail. all apologies.

Urban Decay

my tried and true when it comes to the eyes. “Perversion” is my favorite everything by Urban Decay. this mascara is love! i layer the fuck out of it and it doesn’t clump or smear or smudge and when i’m done i actually have lashes!! OMG! it is glorious. this mascara/eyeliner duo is what i got for xmas this year because i whined that my travel size mascara would someday be gone and i was rationing it. it is very worth the money because as i will explain in my next post, this felt tip liner is totes awesome.

http://www.urbandecay.com/total-perversion-reloaded-by-urban-decay/ud790.html?cgid=1_501#start=1&cgid=1_501

what is your favorite mascara? have you tried these? got something even better than my beloved UD ‘Perversion’