“Accidentally on purpose…”

the attention just encourages her..

Month: December, 2016

there is reason to believe maybe this year will be better than the last

time for the obligatory end of the year blog post.

we all know 2016 was an awful year. so many wonderful, talented and beautiful people were taken from us. not just famous people, here in my world, two of those people were a big part of my life.

the coming year just has to be better but then there is the Trump situation. many people are sure that in 2017, things will just continue to suck. that is very possible but i am holding onto some hope for a better year.

in addition to all of the death and tragedy of 2016 it will always be the year that my illness progressed to the point of needing a lung transplant. up until May it was believed that this kind of talk was a long ways off. here i am, 15 months after being diagnosed, on the list for a transplant. i was supposed to have a lot more time before getting to this point. it is what it is.

i have resolutions.

i have hopes.

 

Advertisements

try, try, try again

i had big plans yesterday to get my self back on track eating healthy again and to put together a solid workout routine.

i’m off to a bad start. i had a cookie for breakfast.

i can still turn things around. i started a journal last night specifically to keep track of my eating and exercise.  i have daily goals to check off each day to hold me accountable. even with the holiday, well up to the actual holiday, i managed to keep my weight below the limit for transplant. i didn’t weigh myself on xmas day or yesterday but i will tomorrow to see how far off track i really am.

in addition to needing to be strong and healthy for transplant, well, i have just become disgusted with myself. i’m so fat. my hair is so short. i just don’t even want to look at myself. i need to start taking better care of my appearance. i need to put on make up when i go out and wear real clothes, not just leggings and sweaters. i’m getting my dreads put back in this week. i can’t care what anyone thinks. i need to do what i can to make seeing myself in the mirror every day less depressing. i have tried to make peace with my appearance. not to the point of giving up on losing weight and being healthier. just enough to make life more bearable while i am working to lose this weight. i have failed miserably. my “ugly xmas sweater” that i wore on xmas eve was too tight and i was so upset with how i looked in it when i saw pictures. i wore this adorable elf sweater dress on xmas and i was so hyper aware of how tight it was and how huge my arms were even under the sweater i wore to hide them. i hated those pictures too.

so i need to lose this weight. i looked in to this DDP Yoga that people have been talking about on FB. i saw some success story videos and the people in them were morbidly obese and had serious physical limitations but this program helped them get healthy and one man even regained the ability to walk. so these people are losing like 100+ lbs in 6 months or something and i only need to lose 50# tops. this should be fairly easy for me to do if i can just stick to it. i won’t be buying the DVD’s. i will just work with whatever is available on the YouTube and add my usual yoga routine. yoga really is the best for me with my breathing problems. i just can’t do any kind of cardio. so i will do the yoga and my usual strength training and do my best to stick to it. there is no reason for me to be so fat. it isn’t right to absolutely loathe my reflection. i have to do all i can.

i’ll save my thoughts and reflections on this ending year for another day. there are still a few days left for more horrible things. more reasons to be so ready to say goodbye to 2016.

 

“the smell of hospitals in winter…”

 

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.

fine.

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.

 

 

“you are right, i’ll move on but my lungs feel so small”

more health shit.

i remember when i only saw my psychiatrist every 6 months just to check in and make any changes to my meds if needed. for a long while the only changes were a decrease in my meds. now? well i had to find a more competent dr and was seeing him every two weeks while he tried to find a solution to this insomnia thing. yesterday he prescribed a med for my anxiety that can take 4-6 weeks to do anything for me so i won’t see him for a month. everyone is out of ideas. even the sleep clinic was very little help. i’m scheduled for a sleep study in January but they don’t really think i have sleep apnea, just ruling it out to be sure. they suggested therapy which i’m already doing. she has been trying to help me with this issue for months.

i remember when i only saw other doctors when i needed to. i remember being annoyed when something would become an issue that took what seemed like forever to figure out and resolve. even with those annoyances i was fairly healthy. i didn’t know it though. i took that health for granted.

it makes sense that having a terminal illness would result in many doctors appointments. still, it wears you out. i was supposed to get a break from all these appointments after today but then my transplant dr referred me to see a liver specialist. so with support group that is two more trips to Ann Arbor this month. I’ve already been out there twice this month alone.

so all of this insanity on top of near crippling anxiety and insomnia and being sick, needing oxygen, stressing over my weight, all of this. it is breaking me down.

i’m trying to be grateful for how well i am doing despite my illness. i mostly only need oxygen when i’m active and to sleep, well to toss and turn all night. i was in the shower yesterday and got a little short of breath which reminded me of the days when i had to have a good amount of oxygen to shower at all. you would be surprised at how taxing the simplest things turn out to be when breathing is something you don’t do very well. the last time i came home from the hospital i needed a seat in the shower in addition to a high amount of oxygen. i needed to use a mask because a cannula didn’t provide enough oxygen for real activity. here i am being able to shower without oxygen. i should be grateful because i could be much worse off. i know firsthand how bad this disease can be. i should be grateful for how well i am doing now because this disease only gets worse. i’m on the transplant list because without a transplant this disease will kill me. i suppose this is the closest thing to “remission” that we get.

so i’m trying to appreciate this. this “good” health despite my illness. i think it would be easier if i wasn’t so anxious and unable to sleep. these things are especially frustrating because there is medication that would help both things but because of the impending transplant i can’t take them. i have these meds but they just sit in a drawer in the bathroom taunting me.

today i got out of bed with horrible anxiety, the new special torture these days. yesterday it was so bad i was afraid to have any coffee. today i said fuck it. i can’t handle caffeine withdrawal on top of everything else and having coffee is part of my morning routine. the anxiety calmed down rather than getting worse. it is still bad but slightly less bad. i am grateful for this and trying to see today as a better day than yesterday.

finding out the roads i have to drive on today are bad has spike my anxiety again but i’m trying to redirect that anxiety. telling myself they will be better by the time i leave. today needs to be better than yesterday.

i’m trying to appreciate what good i have going on.

-i could be much sicker than i am. needing more oxygen. too weak to exercise or leave the house. needing even more medication than i do. suffering awful side effects from the meds i do have to take.

-if these new medications keep making me sick to my stomach, killing my appetite, then i won’t have to stress about losing weight like i have been. it sucks. its not a good way to lose weight but its better than the alternative. so when i can eat i don’t have to stress about what i am eating. its the little things right?

-my husband is awesome. he puts up with so very much. he takes care of me. i might not be here if not for him.

-my daughter is happy and healthy. she has grown into an exceptional young woman and i’m very proud. we are going to have a lovely holiday. i’m so glad she will be here for all of our usual traditions and fun.

-we have great health insurance so its easier to handle the medical bills. we have a really nice home and happy marriage. i have a good car, the nicest i have ever had. money is tight for me but the important things are taken care of. i don’t have to worry about keeping a roof over my head or the utilities being shut off. those days are long behind me.

now i’m feeling guilty because i am sitting here struggling to add to this list. i suppose my worries and fears and anxiety and lack of sleep are overshadowing things.

today has to be a better day. i truly need it to be.

“and i cough up my lungs because they remind me how it all went wrong”

i don’t have cancer and don’t/haven’t known many people who deal with it but someone posted a blog entry on FB that i related to so very much.

it was written by an oncology nurse who has been diagnosed and is battling cancer and is apologizing for how she “didn’t get it” until now.

i know. do i really need to blog again? no. but i will anyway cuz you don’t have to read if you don’t want to and i need to do it. for my sanity.

i read this post and just kept thinking, “yes, this, i get it”.

it is very well written.

so…

I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it.

being diagnosed for me was a scary slow process. things were so frighteningly vague. “lung disease” at first. that was it for awhile and i am embarrassed to say i never really knew how my lungs worked anyway. i just knew breathing was hard when i exerted myself and realized this had kind of been thing most of my life. like i could never run and i remember times when i over did it on the dance floor. i always just thought i was out of shape. the lung biopsy and 20 days in the hospital that followed, being on oxygen 24/7 all of a sudden…that was when shit started to get real. at first i was flat out terrified and certain i was dying, like any day. while in the hospital though i had to learn to control my crying because it was using up oxygen i didn’t have and i wanted out and they weren’t going to let me loose while needing so much. i kept working on controlling the crying even after i was home but it was real hard for awhile. then i had a good talk with a great nurse who explained things a bit better for me and for awhile there was some hope. i was able to decrease my oxygen needs and was showing improvement. my dr said i was a long way off from even having to think about a transplant. within 6 months though…back in the hospital and being transferred to the transplant team. the treatment wasn’t working. this was my best chance. for awhile that was extra scary because the average survival rate after a transplant is about 5 years. that is just a number though and many people are going on 20+years.

I didn’t get how awkward it was to tell other people the news. You didn’t know what to say. They didn’t know what to say. No one knew what to say- but there was some relief when the word started to spread. It may have been overwhelming to reply to all the calls and messages- and to get used to others knowing such personal information, but this nasty secret you’d been keeping was finally out and your support system was growing. I’m sorry. I didn’t get it.

at first most people were fairly informed thanks to FB but really this is an on going struggle when you have to wear oxygen. most strangers don’t say anything but some do. people have given me shocked looks and said things like “but you are so young!”.  this is mostly an issue when seeing someone who is not on FB for the first time since i got sick. they see the oxygen and have this sad confused look as they ask “so what’s this all about? you ok?”. you want to make them feel better, erase the look of concern and act like it isn’t such a big deal. once in awhile though someone will ask what the prognosis is. they know its serious and want to know how serious and how do you tell someone you are in fact dying of something there is no cure for? my particular flavor of lung disease has a survival rate in the 5-13 year range. transplant is your best chance at survival and life is sketchy and scary until that day comes and kind of always will be truth be told. i don’t have much practice at explaining this and only try depending on the person. in general i do my best to be as hopeful as i can.

I didn’t get how much you googled. I told you not to do it. You did it, a lot- and so did I. Searching for information, hope, stories like yours, reassurance. It was impossible not to. My new stance is to just know what a good source is when you google. I’ll help you learn to filter the information. And I promise to give you more information, because I know how much you crave it. It’s not realistic to think you will have the willpower to not search at all (at least it wasn’t for me). I’m sorry. I didn’t get it.

yep. i knew better but i was desperate for information. things were so very vague for the longest time. my actual diagnosis is in fact the epitome of vagueness. NSIP, non-specific interstitial pneumonia. “non-specific”. they can only guess at what the cause truly is of the two most likely possibilities, it could be both. i will feel very foolish trying to get more information from my dr tomorrow. i hope she just has some paperwork or something that she gives people who just can’t make sense of “non-specific”. she’s a great dr but i feel like she will be annoyed at my questions about something i should probably have already gotten a handle on understanding a long time ago now.

I didn’t get how weird it felt to be called “brave”. It’s a word that gets thrown around a lot, yeah it kind of made you feel good- but you still didn’t really understand why people would call you this. Sure you were getting through it fine (most days), but it’s not like you had a choice. I’m getting treatment because I have to- doesn’t really make me feel like much of a hero. I’m sorry. I didn’t get it.

omg so much this. when you spend almost your entire adult life hating yourself, certain that you are flat our worthless…things like this are very foreign to you. you certainly never felt “brave” or “strong” before and you don’t now. i exercise because if makes me feel better, helps me breathe better. i do what i do to stay healthy because it is very literally a life or death thing. i’m not brave just most of the time terrified of dying. so i do the things.

I didn’t get the mood swings. One day you felt confident that you’d completely beat this with no problem; you felt like you could take over the world. And for no good reason, the next day you were just convinced yours was going to be one of those sad stories people tell their friends about. The moods snuck up on you without warning. Literally anything could’ve been a trigger. I’m sorry. I didn’t get it.

i am no stranger to mood swings. these days though…that shit is next level crazy. seeing people dancing or running on TV brings up so much bitterness and sends me into either a fit of “i can do this!” or “i will never do those things again.” type of moods. that is just one example of “Literally anything could’ve been a trigger.” my rapid cycling bipolar makes these mood swings even more frequent and volatile than what i had been dealing with before my diagnosis. luckily for those around me i think i learned a long time ago how to keep these things to myself. it eats at me but i do my best not to drag others into my madness.

I didn’t get how much time this really takes away from your life. I always used phrases like “Cancer is like getting another full time job” or “Life doesn’t stop for cancer” when trying to prep you for what you were about to embark on. But now they just seem like corny catch phrases. It completely took over, you had to stop doing things you love, you had to cancel plans, you had to miss out on things that were important to you. It just wasn’t in any plans- and that alone took a lot of mourning. I’m sorry. I didn’t get it.

if you read this blog or follow my FB then you probably know that every aspect of my life revolves around my busted lungs. i am not even exaggerating. i obsess all day every day about food and exercise because i have to get and keep my weight down. i have to make sure i can have enough oxygen at all times depending on what i am doing. do i need to turn my oxygen up before i do this new workout? yeah i better just to be safe. which size tank do i have to carry when i go out? omg that person almost coughed right on me am i going to get sick and end up in the hospital now? these are just a few of the things i stress about on a day to day basis.

I didn’t get that it hurts to be left out. People didn’t invite you to things anymore. People felt like they can’t complain or vent about every day annoyances to you anymore. People acted differently towards you and it hurt a bit. You certainly didn’t blame them- you had even done the same to others when traumatic life events happened—and no you didn’t want to go out for drinks anyway because you don’t feel good. But you needed normalcy. I’m sorry. I didn’t get it.

this has become one of the harder more depressing things to deal with. we went to a holiday party recently and it was great to see people i missed so much but then i had to leave, didn’t get to see some of the people i had been hoping to see and it was sad to realize it had been over a year since i had seen most of these people. a year. once upon a time i was at some kind of gathering at least a couple times every month connecting and keeping up with everyone. i get that it is probably an awkward situation for people but truth be told i feel forgotten. i know i have been hesitant in the past to invite someone out due to something similar at some point. it feels like a courtesy but now i know it doesn’t feel that way to the other person. it is what it is.

I didn’t get the guilt you felt. Especially to those who are married. You thought about how unfair it was that your spouse had to pick up so much slack- mentally to help keep you focused and calm, and physically at home pulling double weight with never-ending every day chores. You understood that everyone promises “in sickness and in health” when you get married- but you still felt like they didn’t deserve this. You felt thankful when your spouse would say “go get some rest and I’ll take care of the kids” but your heart hurt overhearing them play in the other room away from you- wondering if that was a glimpse into their future that didn’t have you in it. I’m sorry. I didn’t get it.

i have enough guilt to start my own religion as it is. that is just my life but now it is so much worse. he does so much on top of working more than full time at work. i feel like a burden in so many ways and not nearly worth all the trouble. he makes sacrifices big and small because of the things i can’t do. i feel like i turned his world upside down and think maybe we shouldn’t have gotten back together. he could have been with someone who wasn’t so much damn trouble. i’m sure i wouldn’t be alive today if it weren’t for him though and my daughter wouldn’t have had such a great father all this time. i feel as grateful as i do guilty.

 

there is a lot more to the post but these are the things that resonated with me. the things i could relate to. i’m not trying to have a big pity party here, i’m really not. things are just feeling especially difficult lately. maybe being on the transplant list is a little too overwhelming for me. maybe it is the holiday season. maybe i am still not getting enough sleep. maybe i just really need a fucking drink.

 

“my lungs will fill and then deflate…”

i’ve been in a dark place for awhile now and i’m trying to climb out of it. i really am. well truth be told some days i don’t try as hard as others. it’s a dark place where sometimes i can’t find the strength to care enough to do the climbing.

i know that, especially given my illness, i should be living life every day to the fullest. i know this and i want this. i feel incredibly ashamed and guilty for the emptiness in my life. my day to day. i worry often that new lungs will be wasted on me. it is really hard to admit that. maybe it is one of those things you don’t say out loud. however, it is my hope that putting things out into the world holds me accountable to change them. in an effort to find a way out of this i am trying to remember what gave me joy when i was going about life taking my health for granted. this has proved to be rather difficult. it is easy to assume that things i once looked forward to are not things i can look forward to anymore. i’m not just sitting around feeling sorry for myself. i have a whole new reality to adjust to.

everything revolves around my busted lungs. my sleep has been so severely disrupted since having to stop taking my anxiety medication back in June/July. certain medications are off limits, because of the transplant. i have been super focused on and obsessed with diet and exercise. i have to get and keep my weight down, because of the transplant. my anxiety is turned up to 11 almost all the time. this has been especially awful the last month, since i was officially put on the transplant list. i have realized this morning that i have to give up on a medication that has helped immensely with my appetite. i had my suspicions last night and since waking up around 4 am this morning i have realized it is very likely increasing my anxiety even more than everything else already is. so now i have to get through the process of it leaving my system and i’m hoping it isn’t as bad as the first time i had to stop it. it shouldn’t be, i’m at a much lower dose. aannnd this is my life. medications and did i eat the wrong thing and i’m such a failure because i didn’t exercise and will i get any sleep tonight?

not even 8 am and i’m struggling. i tell myself i will get back to doing my yoga every day. soon as i finish my coffee just like i used to, everyday. when i was “so strong” and everyone was so proud of me. people keep telling me how “good” i look. they say i look strong, healthy…i feel weak, tired and fat. i tell myself i will practice the piano today. then i search. i search my brain. i search the room. how will i fill this day?

i decide i have to deal with the day as it happens. one day at a time is too much. i’ll enjoy my coffee. i’ll do my workout. i’ll hope that makes me feel better. hope i feel the strength people say they see. i really need to get through this week. i’m pretty anxious about my first follow up since being listed. i’m ready for Friday to be over. if i have to distract myself on my laptop all day that is fine. i will do what i have to do to get through this anxiety and maybe i’ll keep getting sleep with the new sleep med i’m on and sleep better when this other med leaves my system. maybe. maybe things will be easier when i am sleeping again. i have to believe i will get back to some kind of real sleep. i think i slept about 5 hours last night and only woke up a couple times. it has to be getting better.

i’m trying.

so what’s this lung transplant business all about?

when someone finds out i am on the waiting list for a lung transplant nearly every person asks some version of the same question. “when is the surgery?”

i have absolutely zero control over this. well technically i can refuse the lungs when they call but why would i go through all this and then do that? so yeah. no one at U of M can even guess at how long i might wait. some people get the call within hours of being listed, some people never get the call. several factors are involved in this. things have to match up perfectly in your area and your LAS (lung allocation score) determines your spot in line if more than one person matches a particular set of lungs. the factors i know of are blood type and body size, like height. for example, my blood type is B+ and that has to match and the height range for lungs for me is 5’3″ to 5’7″ and my LAS is 35, slightly above average for U of M i am told. i think LAS scores go up to 100. my blood type is rare and from what i understand this could work in my favor or possibly against me. on the one hand less people are a match but also less donors are available. i hope all of this makes sense. i hope i am not giving any incorrect information. this is how i understand these things. i am learning new things all the time.

as for the surgery itself. wow. it is a very complicated procedure. more so than any other transplant unfortunately. i am sure i could google videos of the actual surgery but the DVD that U of M gave me was plenty for me. it didn’t show the actual procedure but did show what to expect during recovery. well some things. it explained the things i really needed to be prepared for like all the chest tubes and getting up and walking and using my new lungs right away. like literally usually the day after you are off the ventilator they have you up and walking with all your tubes and wires and the things they are connected to rolling with you on poles and in a wheelchair in front of you. like the chest tubes are draining into these boxes and they go with you until they are taken away. i am on the list for a double lung transplant. i will be put on a ventilator and they will replace my lungs one at a time and then i will be in ICU for at least a couple days, usually taken off the ventilator after about a day, then will be moved to a step down unit for maybe two weeks. honestly the time frames for these things is totally dependent on how well i am recovering. some people do really well and get home pretty quickly and others might have problems and be in the hospital for months.

obviously recovery doesn’t end in the hospital. they require you to have 24/7 care for a certain amount of time once you are home. for a good while i won’t be able to lift anything heavier than a gallon of milk. i will have a scar from the surgery, i think the most common for a double is what they call a clam shell incision which would be an incision all the way across my chest. i will be on several anti-rejection meds. for the rest of my life. these meds suppress your immune system so that your body doesn’t fight this foreign thing in your body. so it doesn’t reject it. they say if you make it through the first year without rejection then you will do better than those who get it right away. there is acute rejection, like a flare up that can be cleared up and then there is chronic rejection that often leads people to getting a second transplant. i had no idea that was a thing. anyway. so then we get into how dramatically my life continues to change. a common explanation for this is that you are trading one set of problems for another. i am already on one immunosuppressant drug so i already have to be careful of sick people but after the transplant i will be on at least three so i will have to be super careful. i will need to wear a mask in large groups of people or when in close quarters with strangers, like if i’m on a bus or a plane. i will also have to be very careful when it comes to allergens, like mold and birds and such. these things can make me very sick. no more feather pillows or blankets. well that is already a thing because one aspect of my lung disease is due to the birds we owned for 8 years. i am already avoiding buffets, which isn’t really an issue. i’m not worried about buffet style meals with family. i will have to have my steak and burgers well done, no mushrooms i think and no raw fish. so no more sushi which means i eat that every chance i get until they tell me i can’t. now i have not been told to avoid these things by any dr right now. i have learned all of this from the support group i follow on FB. such a wealth of information. every center is different so my drs have the final say on anything but it helps to have a place to ask questions to be sure i know all the questions to ask said drs. there will be many things i have to avoid, i will be educated on this and have a list when the time comes.

so that is i think most of what i know about this whole process.

i am still learning more about my diagnoses. i know that i have pulmonary fibrosis which is lung scarring. this is irreversible but can be slowed down or even halted altogether? i’m not sure about that. i also know that i have Hypersensitivy Pnemonitis which is due to the antigens from the two cockatiels we had. the diagnosis on my letter of acceptance on the transplant list is NSIP, non-specific interstitial pneumonia. there isn’t much information online at all about NSIP. it can be linked to some kinds of autoimmune disorders which i believe i have tested positive for from what i am told but i think that is still being figured out. i need to get more information now that i have tested positive twice out of three times. it is also associated with the Hypersensitivity Pnuemonitis. so while it most definitely was bad for me, i did not cause this with my smoking. i was never told that i did but i smoked for a long time and i felt like a right idiot for it when all this came about. i mean i know it was a horrible habit and should have never picked it up but the shame i felt thinking i had done this to myself so stupidly was just awful. i still feel like an idiot but knowing that the only other thing i maybe could have done to at least delay this is never own birds. really though there is no way to know. i should have never smoked but that isn’t what is killing me right now and that helps me live with myself a little better.

so going forward. i take my meds, prednisone at least for now. she is tapering that down, i’m down to 7.5 mgs and i imagine if possible she will continue tapering until i am able to stop taking it. steroids wreak havoc on your body and we already know i will be on at least a low dose again after transplant and for the rest of my life. i take the immunosuppresant and two antibiotics. the antibiotics are a preventative measure because of my compromised immune system.i’m a lot of meds. any health issue i have has to be dealt with so that i am healthy as possible in any way i can be. right down to mild allergies. so far i have done well since June. aside from the lack of sleep. i’m slowly getting my weight down and i MUST keep it at or below 192 or i will be taken off the transplant list. so no pressure or anything. ha! i’m not ok with being this overweight anyway but the meds cause weight gain. gah! i will see my transplant dr every three months. the day of those follow up appts i go for breathing and walk tests. these tests show progress or decline and let my dr know how i’m doing and also determine any changes in my LAS. now that my carpal tunnel is managed i can go back to pulmonary rehab and that will really help keep my strength up and help me get my weight down.

this is my life. this is what’s going on with my lungs.

i’m gonna make this place your home

i’m sitting here kind of just staring at my computer screen wondering where my voice went. i remember when i couldn’t shut up to the point that i was sure i was so annoying people couldn’t stand me. i don’t know who i am these days. is this who i am or is this a phase of depression and inertia due to perpetual lack of sleep? i really do literally, yes literally, toss and turn in bed for hours. i don’t think i got any sleep the last few nights til as late as 4 or so in the morning and i only slept just long enough to be out cold when my husband kissed me goodbye when he left for work , that is about 6 am.. he kisses me goodbye every single morning. i know this because he has told me when he is careful to kiss me gently trying not to wake me when he knows i’m desperate for sleep. i have missed those kisses the past couple nights. when i sleep earlier in the night i’m awake for them. i can count on one hand the amount of nights i have gotten more than 4 straight hours of sleep in the last maybe 3 months? before that i don’t remember how bad this lack of sleep issue was but i know my sleep has been an issue in one way or another since about July when i stopped taking my anxiety/sleep med. i had to stop it because of the impending lung transplant. so yeah. when people ask how i am doing my answer is “i’m not sleeping but otherwise ok”. not sleeping has become a huge deal. i think honestly it is due to anxiety. i was never even tired until i started  this new medication that my transplant dr prescribed. i was so anxious and restless that i couldn’t lay still and had to go toss and turn in the guest bed to avoid disturbing my husband. i still toss and turn all night but i am actually tired, i can lay still longer and i hope my sleeplessness is less annoying these past few days. i’m so grateful to find myself yawning as i type this. i don’t want to be exhausted all the time but it is nice to not be so amped up with anxiety that i couldn’t even have one cup of coffee. i haven’t really needed coffee since maybe my days as a server on the graveyard shift but i like to have my coffee. it is part of my morning routine.424 words about not sleeping. i suppose that says something about how bad it is. or maybe how obsessed i am with it. i love sleeping. i envy people who can just fall asleep effortlessly. my husband puts away his tablet and rolls over and is asleep with a couple minutes. he’s a light sleeper so he wakes a little bit if i move too much when he’s got his arm over me but he goes right back to sleep. my friend Sarah can sleep like its her job. i envy you sleeping people.

i have gotten my weight back down to below the target weight for being on the transplant list despite my laziness. i don’t know if this is because of the other med i tried again for sleep, because it gave me a couple nights sleep the first time i tried it at what turned out to be too high a dosage. i haven’t had the crazy prednisone appetite that was making weight loss nearly impossible. maybe also i am burning extra calories tossing and turning at night so much. ha! knowing i am losing weight despite everything else has lifted some anxiety. if i can’t keep my weight down i get taken off the transplant list until its down again and that is just unacceptable. i’m not ok with being 190+# at all anyway so not being able to stay at or below 192 just stresses me out like woah. today i’m at 191, down from 193 yesterday. i’m not real interested in eating until later in the day and even then if i eat too much i feel over full and wish i hadn’t eaten so much. i feel better when i am not hungry all the time. i’m still eating, i don’t need a lecture about how starving is the worst way to lose weight. i know this but i also know i have to eat much less to lose weight and i have to avoid carbs the very best i can. maybe drinking tons more water is helping as well. the psych dr said i needed lots of water with the med he just prescribed cuz it can be hard on my kidneys. so i drink tons more water and i was already pretty much only drinking water. thank you husband for the sodastream. i love my bubbles!

i wish i had things going on in my life that weren’t entirely health related. every little thing is about these busted lungs and not sleeping and crazy anxiety. do i have a real life anymore? i used to have something like a social life but the anxiety got so bad i haven’t even been to pulmonary rehab. that needs to change now that my carpal tunnel is under control and i can use all of the equipment there. i don’t want my drs at U of M thinking i’m being non-compliant. i’ve just been using my treadmill at home and i have this floor peddling thing that is the same as the stationary bike. basically i’ve been doing the same amount of exercise at home. i need to get out of this house. i need to find more in life than being sick. the next couple weeks are going to eat up my money. i have several appts. a couple of them being in Ann Arbor so there goes my money into my gas tank. i would rather spend that money on snobby coffee with Jocelyn and breakfast dates with Mary and visits to see the mamas and bebes in the family. these kids grow up so fast and i’m missing out on it. i’m looking forward to the holiday more than usual. Mary will be here for xmas eve and morning like when she lived with us. we will watch all of our movies and eat italian food like we used to always do. last year wasn’t bad but this year she seems so much more into the holiday. she had her tree up before we did and she put up lights and set up a christmas village with the stuff that we had extra of. she came over to make cookies. its been a nice time. i love seeing her so happy.

what a jumbling mess of a blog this is. i should save this useless babble for my journal.

i have been debating even posting this but i took the time to type it all out so here you go.