Empty Transplant List

Not literally, but it feels so empty now. Beckoning me. The monster that ate all my friends.

Early early this morning my good buddy LB got her call and later her surgery. She did so well so far, despite some tricky antibody shiz that had to be overcome (her donor was the perfect match for her uniqueness, and we expect and hope that means she's likely to continue her smooth sail into recovery). LB was the last of my friends on the transplant list. Also the last to be anywhere near transplant in my opinion... minus me of course. We are talking 3, almost 4 straight years of having someone to cheer for. Someone to hope for their call, to excitedly await what they "will be like" with a "normal" body...

This feels on purpose. Fateful. I dunno... maybe I subscribe a little too heavily to the 'everything happens for a reason' publication, but I always feel like things line up on purpose in my life. I think I'm meant to travel that transplant road without CF co-travellers, but I really can't imagine why.

People like LB inspire me to get on that list now. She listed at a perfectly appropriate time (we've matched lung functions for over a year- yikes.. I'm behind... ) and got, knock on big fat wood, the reward. The way it should be. Sometimes this inspires me to do the right thing. Othertimes I irrationally imagine that for every good transplant my friends get, the more likely mine will go crappy. Someone's has to afterall? Too much thinking. Not enough doing. Thoughts are poison.

ANYWAYS, life is still good. I had my clinic that came 3 months after the previous one. A small victory of staying away from SMH for that long without a hitch. I did well considering. Gained weight, pfts about the same, transplant non-listed status accepted by head honcho doc. Blah blah rah rah. I'm glad, but not proud. I will feel scared, but incredibly proud when I take my leap. Of that, I'm certain.

Monday I got to try out the other side of the fence. Another meant-to-be. Mom had emergency appendix surgery. Thankfully we google-diagnosed her relatively early but it was awful watching her in pain, and hard to wait the short 45 minutes through the surgery, and the long 8 hours leading up to it.. despite its routine-ness. The kind of thing that hurts knowing you're going to do this to your family again x 8 hours x major surgery. Youch.

LB, since you're better.. I guess we wont' be seeing much blogging anymore since thats your M.O.

Couldn't be happier for you.

Bike Bike Bike

Miracles still happen, don't they?

My lungs sure think so. Somethings more 'right' than usual. I'm half trying to analyze it to death so that I can cling to it, and half trying to play the "if you truly love something you let it go" card and just enjoy it... haha.

I'm taking this opportunity to do more, not less physio. More, not less-----er, no---bike (I've been awful at it, with the excuse being summer weather doesn't warrant stationary bike use). When I used to come fresh out of i.v.'s I tried this too.. hoping to hold onto the good. It never seemed to work but that's no reason to stop trying, right? Right.

I've wondered about a few things causing my downswing in.. I think?.. Inflammation symptoms. One hypothesis is being out of azithromycin for 6 weeks turned into a discovery that I'm better off than on it? Another could be new nephew Elijah's magical baby cuteness cures lung problems? I like to credit the baby, especially when he decided to allow his first laugh-a-thon to be hosted at Auntie M's house the other week. Super early for his age, I might add.

Just when you think you know your health pattern, it changes. And for once I'm grateful. No hospital admission for me this October.... she proclaims on the 5th, nervously laughing...

When every day is a lifechanger

Being absent in the blog world for a month or two doesn't sound like something that would require a long list of catching up. I'm learning more and more that CF is a window through which we can see that life actually DOES change very often, sometimes for the happier, sometimes not, but always to be respected and appreciated.

I wish I could recall my entire time since the last entry, but recent events shine louder and therefore thats what I can think of. This week I lost both my grandmother and a close CF friend. Mere days apart. In their own way they were both shocking, as I have never lost a grandparent, and because this particular CF friend radiated life even at her sickest. I have never felt so robotic after deaths as I have this week. I'm not sure of the cause, but I know that "growing up" can vaguely cover it. Theres something about losing people who you've actually spoke of death with (CF friend, and the CF friends I lost since 2008 did not have this talk with me, so this is new) and theres something else about losing people that are closer and closer to yourself and are immediate family who have always been there (Gramma). Both things seem to bring an eerily deep truth with them.. that we are all going to die. No one is exempt. Being 29 when this is being driven home is odd.. and yet I feel like most people are actually older, not younger than me when they come to this realization...

I'm spending today, my first with no "busy" thoughts or stuff to do this week, organizing my thoughts. Because of this, I don't have much more to say right now.. but its funny how things pop out just during the moments you think you are having a mental break from it all. I was cleaning my fish today.. I always run his new water a few days before I switch him because I know the chlorine and chemicals in tap water need this time to dissipate, also it helps with having the correct temperature ready for him. As I fought him into his little net from his very grungy bowl (due to the events of this week) I said aloud, "dont fight it, just trust that you're going to a better place" and there it was.. another metaphor for life and death. I swear I wasn't trying to think of one either, but as I lifted him in the net, forcing him to lay in pure air for a few seconds as I moved him, I felt for that little fish, and how often I force him to do the thing we have to do when we leave this world.. have a little faith and get through the transition to a better place.

New Year

August feels so different. There's this new baby nephew of mine, who I'm loving. There's more babies and plans on the way this month.. showers, birthdays, busy busy. I'm starting my new agenda/journal thing.. I remember starting them every September in school and pledging to write neater and be more organized. Then there's the ever-present transplant.

The reality-check of CF oddly enough hits me (us?) over and over, but right now it hits harder. Seeing my baby sister get to move ahead of me with her gorgeous child, while wonderful, is hard. Don't get me wrong, I most certainly don't mind that she's first to have this. In fact, I love it. She's always second, as most second-children are (to reach milestones, and in our case, to marry) and I think its cool for once she gets to have something first. BUT... because she's younger, I can't just shrug off the symbolism.. I can't tell myself "its her time now, and mine later" and move on... because I am older, because Mike and I wouldve wanted kids fairly fast if things were different (because we want to be young with them, and because I'm like every other woman with a ticking biological clock). For these reasons her mommyhood symbolizes for the first time in my entire life, that I'm different and broken.

CF is fantastic for that, really though.. I mean we are lucky that for the most part and thanks to research we CAN live normal lives. I'm thrilled to have gotten to go to school, to date and marry, to work.. I am forever grateful and wouldn't change my life. I know I got a lot more than so many others get. And when I get sad, I've been remembering something lately. My sister was born to be a mom. I wasn't. It's very true. She had dolls and loved children and babies ALWAYS. Me? Not so much. I always pictured myself with kids, like most people do, but I didn't long for them like she did. I longed for love. A fairytale one. And as I find life goes, you get what you need, not what you "want". It was when I fell in love that wanting children began. I wanted to bring our love to life. Sorry, want, present-tense.

I'm not 100% done with hope. I'm really not. I'm just the type who likes to be okay with life, no matter what it gives me. And that's what I'm working through right now. Because I know I'm lucky, no matter what the future holds. I'm lucky and I'm happy. There's still surrogacy, and adoption, if things for me go well. Which brings me to transplant... I have officially met my goal of seeing my nephew born before listing. I'm very proud of that and he is worth the moments I've had already. It doesn't make big choices any easier. Somedays I long to list and move on and have my chance to breathe and feel free. Other days I want to wait as long as I possibly can, knowing the uncertain future that transplant provides. I can promise you one thing, I doubt I'll blog about this again. I have no more reason to wait except following my gut and the guidance of the doctor's. No more reason to research, to plan. I'm "ready". I know what is ahead, its just gonna come when it comes, and that's how it has to be.

Happy 29th birthday today to my fabulously supportive husband who is always willing to ride this rollercoaster with me, who gets stronger everyday, makes me prouder every day, and makes me believe that we have a purpose, together, that hopefully isn't fulfilled for a long, long time.

Baby Love

July is here

Hi folks.

Nothing much new here. I'm the same, which is more than I can say for a boatload of my friends. PErhaps why the urge to blog comes ever-so-slightly, I write half of one, then don't post (also blame firefox for being the only browser that WILL post.. and I'm an IE fan.. you do the math).

This past month has been busy-er-ish. Lots to do. Birthday's, showers (baby for 2011, not bridal), golf for hubby (more time alone for me: totally fine), nicer weather/invites for BBQ's (I'll admit, going out in general no longer thrills me... bad Michelle).. etc.

This month saw two clinic appts, one at my regular clinic which produced magical fake higher lung function results. I still don't believe it was any more than a machine glitch, but it sure was nice to stay iv-free for longer. Total fate, I swear. I keep saying that I'm confident that I am health-safe till after my sister has her baby. I believe its fate for me to be completely stable until then.. and here we are in July, now, at last.

I also revisited my transplant hospital since it has been 6 whole months since my transplant assessment. I saw doctor quiet-voice for the first time since a year ago when he turned me away saying I was too early for transplant. Ironic, since I've gone from angry at him, to almost being super grateful for him as I implore the universe to let me see my bloodrelated neice/nephew come into this world before re-entering hell. He told me this week that he will "see me in 6 months" and that he is completely content with me waiting to list (even though I was told in Feb that it was time). Dr quiet-voice doesn't really have my confidence.. I think those of us who decline the slowest are the most in danger of missing the boat for transplant, even though that may sound counter-intuitive.

23 days until my sister is due with her baby and I can revel in possibly the only child I will ever know to have genes of my own. Of course, I look forward to more than that. I am eager to see my whole family excited. For my sister and her husband to experience the wonder of parenthood.. the blessing of it.. and for my parents to be the excited/fun-loving/spoiling/etc grandparents they were destined to be. If I could only also see my husband be the father he is destined to be, I am pretty sure not getting to be a mom would almost be okay in my life. I will have 3 gorgeous children to watch grow and who's lives I can impact, and I feel blessed for even that.

Here's to July, and focusing on the crazy-exciting and letting the scary decisions rest for just a little bit longer.

29

Well, I'm reaping the rewards of a decent clinic and thoroughly enjoying my time with hubby. I only hope I can do the same next week and get another ton of time with him. My ideal lifestyle right now is having him around (and doing a few more outdoor activities than usual), but also having him leave me to do more active things daily so that his mind and body can be exercised to what a healthy person needs, while I rest and do treatments. I know this is a hard system to create for us, being a couple who essentially is attached at the hip, but slowly I see it working and it gives me a lot of peace of mind. I like seeing my man happy, and it helps me relax and focus on taking care of myself when he is. He will have to adjust again one day when I get my mojo back with new lungs. Something tells me that adjustment will be easier.

It's getting hot out, which doesn't thrill me, but I suppose it still beats the constant rain we've been having. It's sort of a lose-lose situation for 24% lungs.. I actually don't mind the rain at all except that we can't really walk the dog in it, and therefore have almost no reason for getting some outdoor o2-accessed walking happening. However, with the humidity, at best I can walk a tiny bit then have to return to the car or house. I've also found that since only a few months ago I was upgraded to a portable oxygen system that is too heavy to be carried, that our usual park walk sucks now. So far the grass has been too muddy anyways, but even when its not, the wheeled oxygen just struggles to navigate the field. Today we took the street instead, which may be the new way of things. I do enjoy watching Bauer play with the other dogs in the park off-leash though.. so maybe theres a way to do both.

Lately I've been getting into a few new ways to earn freebies while I sit on the computer so much. I had my contest thing, and now I have swagbucks. You can see the widget on the blog here.. what it is is essentially a reward program for (I believe) letting these people see what you're searching online. You use their toolbar and earn swagbucks for doing so throughout each day. You also get them by doing daily polls, finding codes (on their facebook page, eg.), playing games, etc. At first I was skeptical, but I found them while contest hunting and they were referenced on moneyville.ca.. which seemed like a reasonably trustable site. Swagbucks can be redeemed for lots of gifts but I'm interested in the amazon.ca gift cards. If you're interested, please let me "refer" you so that I get bonus bucks lol..

Oooh I just realized that I titled this '29'. My birthday is on Wednesday..I will be 29 and it feels scary. On the cusp of something big... 30. Ironic that it parallels my path along the cusp of something else even bigger: transplant. A lot of CF'ers value the attitude "don't regret getting older, it's a priviledge denied to many" with which I agree wholeheartedly. With that said, feeling a little uneasy with age doesn't make me ashamed, it makes me feel normal. That feeling is priceless and elusive sometimes, so I'll take it.

Happy hot weather to all you who can fully enjoy it, and to those who can't, keep your head up and find a way.

Loving Flukes

I had clinic this week. A mixed bag of results. Weight down 2 more pounds for a now-total of 6. Pft's up higher than they've been in 6 months........... on the first blow. But I couldn't repeat the wonderfulness.. subsequent blows went down and down. Depressing, but I got my ticket to no-ivs so I walked away pleased with seeing something different for a change. Though I'm back in a few weeks to see how much this shaky result can hold up. I agreed with that plan fully, and honestly expect to finally get hit with ivs next time around.

Whatever, it was fate that in the next few weeks I get to enjoy my birthday, Hubby & I's 5-year dating anniversary, his first of two-weeks off, before possibly missing out on real life for a bit. I'm treasuring that.. because at first I sat in a pool of selfpity for a few hours post clinic.. despite the good. I only hope my ability to shake off those sad sack feelings quickly stays with me for the long haul.

My blogs bore me lately, so theres the update and we'll see if I can take some classes in being interesting before next one! (spoiler: nothing's going to change)

I'm doing an experiment

It's a little late in my original-lung days to do this sort of stuff, but with all the time I have I just can't resist...

I've wanted to address this for a few years actually, so I kick myself for waiting, but I have had trouble with pulmicort since the beginning. I haven't been on it long, really. We added it in '08. And truthfully, I'm fairly sure that it doesn't do me a lot of anything, because according to the pro's, I don't really suffer from the asthmatic component of CF.

However, we all have some inflammation, and since that's exactly what pulmicort attacks, the potential is there. When I was first given pulmicort, they had me do this test involving a mouthpiece and 3 little lights that you had to light up with the power of your sucking-in reflex. It took me 8 tries at the time, and all of my energy to make the minimum number of lights light-up. I remember thinking... if I am just barely struggling to do this after repetitive tries... how does that confirm I'll hit the mark with each dose of the drug everyday??

Meanwhile, during every clinic visit I noticed that the wall advertises 3 forms of the anti-inflammatory inhalers. One called "flovent" is given in the ventolin-style inhaler, for which you simply use an elongated tube, press the button, and breathe in gently and hold. MUCH easier than this suck on a powder-containing-tube crap. At 22% lung function (yes.. down again at clinic yesterday...) I am significantly crippled beyond even the struggle I faced in 08 at the beginning... To make a long story long, I found out yesterday that the only reason we are given pulmicort versus flovent is that flovent is not covered. I HAVE PRIVATE COVERAGE!!!

As someone who sooo rarely has a raging lung infection, I think this change has huge potential for me. Not "avoid the list" potential, nor even "avoid the looming admission" potential.. but perhaps just "find an even greater stability of symptoms" potential. Every little bit counts, people! I will let you know what I think, if anything, of this change.

As April Closes

Hmmm new new... I struggle with new stuff for the blog lately, which is sad because I'm barely writing once a month.

My health is stable it feels at least.. clinic hasn't let me in for my standard once-a-month check because they've been busy, but I go next week to see what the numbers show. Apparently this week had a few cancellations and was "practically dead"... no doubt my scheduled-in-advance-by-3-weeks appt will be overloaded and packed. There is no organization, no matter what they try.

Lately I've found myself organizing everything around here, especially health-things. It feels like something that improves my world, as opposed to the worsening that is constant in end-stage CF. It's uplifting. I put hooks on the wall to store the excess O2 hose, as well as one that I can loop the nasal prong part onto right beside my bed. Since I pretty much only use oxygen for sleep around here for now, it works wonderfully.

I'm still eagerly awaiting my sister's child's birth, but still 3 months to go. 3 very important months that will be both fast and excruciatingly slow. It feels a world away.

My husband has some vacation time coming up next month, and its hard knowing that travelling anywhere has become harder as of December 2010 (because of oxygen at night). If you talk to me about anything involving going away, you might get the impression I have grown tired of it in my life, but you couldn't be more wrong. It comes up alot in my family, because we've always enjoyed adventures together both small and large. From a day at the zoo, to quaint northern adventures, to luxurious caribbean cruises. When we talk about it now, I visibly shrink. I know I do. I've always been very expressive. When no one is talking about travelling, I barely think about it. I know those days will return.. but for now I put them away and enjoy life as is.

Anyways, so I'm not sure what the complete plan is for my husband's 2 weeks off, but I do know we've talked about renting a jacuzzi for our backyard. They have a company around here that rents them out weekly and will even let you keep it at no charge for a few extra days if its not needed for rental immediately after you have it. We've always enjoyed our jacuzzi time, and since there are some strong restrictions around them post-transplant, we may as well jacuzzi it up wherever and whenever we can now :)

Here's to enjoying life, whatever its restrictions, because it's beautiful and short. I do it for me, and in honour of people like my friend B who I miss very much right now and is needing prayers in the icu of our transplant hospital.... as she fights a mysterious problem the doctor's can't figure out...

Fight of our lives

I wrote this over a week ago, and a new one tonight.. but ive had some trouble with my browser.. so now that ive figured it out, here it is:



I think about transplant everyday. Today's angle finds me beyond the (petty?) fears that hold me back from listing. I'm thinking almost as if I have already done it. Bizarre.

I was mentally trying to pre-arrange some of what's to come. Today, if I can find my coordinators email, I am going to try and set up getting done any vaccines I may need to get before listing. Also any dental work, etc. Beyond this, I was realizing I should really get set in stone who is going to take me to the 3x a week physio, when and how. I know it can be done, but I'm realizing how much of an undertaking this whole part will be. Even for a healthy person it would be.. but add in doing this at the sickest and hardest part of your life. Its a wonder any of us get to the surgery, let alone thrive afterwards.

I also begin to understand the people I was told about during assessment. I see how some misguided souls feel that after all of this work, they are owed a "normal" life. I see how it could be easy for the reckless to think, "I don't want to take antirejection meds, or follow the guidelines of what to avoid.. afterall, look what I did to get here?". I feel pain for those people suddenly, instead of chuffing at them as I did during assessment. I rolled my eyes just 2 months ago and said to my coordinator, "don't worry about me, I can guarantee you I won't be one of those morons". I still won't, but today I feel like those words were extremely and unforgivably cruel. **sidenote: I'm pretty sure I didn't actually say 'morons', but the implication was there**

I also understand my stress even more. My anxiety. In a way, today was about forgiving myself. I'm being pushed everywhich way lately on 'to list, or not to list'. Mostly to list, and I'm grateful for the friends that are guiding me to be strong and to plan for the scary cliff that is probably closer than it appears. Your coaching, paired with my lifelong sense of duty (and hopefully a pinch of luck) will be what gets me to the other side. xoxo

Thursday Dec 8, 2005.

*** This is the first of several written "diaries" from my very first hospital admission in 2005. I had written it on the pages of a notebook, and accompanied my words with a large drawing of a girl (me?) holding her head in pain while wearing a shirt with a bird on it. Next to that, were the lyrics to Alicia Keys' "Caged Bird" (still a fave of mine to sing in the shower). Also included were a weekly chart: M, T, W, etc which was mostly crossed-off, an "I miss you Smuckers" statement (my job), and a time-schedule of my iv meds.

Despite my high embarassment at these diaries, I like looking back even now because I have grown from the petty fears I once let control me surrounding CF. I also can use this to take a look at the way I'm confronting transplant currently. Finally, I like to think that when I am through the hardest part of the transplant journey, I can point CF'ers to these words and show them that I most certainly was right up there with the most fearful of 23-year-olds, and if I can do it, they can. Enjoy. ****

It's always something now. First the car accident has me feeling sick over buying a car, now I'm on a hospital bed looking at over a week at least of medical hell without work to keep me fighting. But I have to fight. More now than I've ever imagined. I've felt nauseous with worry over this for as long as I can remember. Probably 3 weeks at its worst. I'm terrified about getting an IV. Moreso about keeping one. Theres these things called picc lines and midlines that they really want to do to me but I cant accept. I only found out about them on Tuesday. I've cried alot since then. These lines start at the bend of your arm and thread to large veins, in the case of the picc right above the heart.

Doctors are now reluctantly saying that I should be able to get away with the peripheral, although it will have to be changed at least once. That scares me too but its doable. I wont have a panic attack. I just have to think about how Andrea got one and shes a very scared person usually. And how Justin had that and worse because he had a spinal tap.

All this waiting has been a mixed blessing. My body is suffering from the stress. They didn't have a bed for me for 2 days. Now I'm here but iv-less because I went for xray and bloodwork before it. I'm still quite nervous. I need to sleep and shower with it but still protect it. I won't be unplugged for 10 days. Mom and dad found out I'll be allowed to go shopping so theyll force it. I don't want to hurt my iv at any cost. Boredom I can deal with.

This can't be real. When people talk to me I can see it in their eyes. That difference. The feeling that washes over you when you talk to a disease. Someone with cancer. The "other" or maybe its just my imagination. They really are very nice here. Part of me is afraid to stop being scared because I need to keep squeezing pity out of them so I don't get forced into a picc or midline. This will be the longest 10 days of my life.

I'm going to have lots of visitors I know. And mom and dad everyday. But honestly, as always, its the people most unimportant that I want to hear from. People that almost couldve never known I was different. That don't see me at my worst. My coworkers. I miss them even more than I thought because they symbolize normalcy.

Alina called today. It stopped me in my tracks and broke my panic ever so briefly. I want to draw on that power. I just want to get through this so I can find a new way to fight. If I can last till I move out, well, then the pressures' all mine. I dont want to come back here.

Left in the Dust

I feel I'm constantly meeting new friends who are on the cusp of transplant and telling them excitedly "together we will extend our time.. we'll encourage eachother" only to find them leaving me on this side of transplant within months while I go back to standing alone. People who were much healthier than me plummet and list before me. I know I can't stay here forever, but I still feel that the traffic should not pass me as fast as it does.

At least it keeps me remembering reality though. Maybe that's the purpose it serves. Maybe also watching a load of people share their fears, and then express their happiness afterwards is meant to help me as well. As I head towards my goal-listing-time, I need all the help I can get. Something I've repeated alot in past blogs. I am a firm believer that everything happens for a reason, and that timing is everything. The timing one is tricky though, because I have to try and sit back and let my gut instinct of what I "should" do take over. I am very happy about my decision to see my neice/nephew born before I take on this journey. I'm also feeling a strong pull to get this going while the weather is nice... because it will ease the effort of driving to Toronto for physio, and also because the summer tends to leave me sicker by fall... I can't do that more than one more time before I'm in extreme serious danger.

I've pursued the anxiety "help" to the full extent now. i've been on the meds for long enough to feel their full results, and wipe out any side effects. I've found myself alot tireder, but hopefully getting out more will help that. I also think the meds are taking the edge off of my fears, which is wonderful. Unfortunately, I ran into a new anxiety snag yesterday when I discovered that having my dog on my lap while my oximeter was around my neck was a bad idea. I am now without one for at least a few days and I am realizing the full extent of how comforting it is to have it. I'll consider these few days a test of my strength.

I also saw the very busy anxiety doctor at my clinic hospital. He was super nice, but I didnt get any advice or help that I hadn't already thought up for myself. Just a suggestion to slowly increase the amount that I leave my comfort zone of home. Certainly not worth the drive to Toronto and back, but I'm happy I tried it out. I will be seeing him in clinic next time, which is much more efficient.

That's really it for now. I wish all my newly post-tx friends, and soon-to-be listed ones the best of luck and health.

Process

I can hardly believe its been 2 weeks since my last post, 6 since I was called with the transplant news, and that my sister is halfway through her pregnancy. All of a sudden, time can't go slow enough for me.. and its flying because I don't want it to.

I have moved forward with steps to cure my anxiety, if that's possible. I'm skeptical, because I have the most active mind of any I swear. I wish I could trade it away. I started some meds that were supposed to work immediately to suppress the anxiety. They did nothing in any way, negative or positive.. and then after 5 days of taking them I was called by my nurse who suggested we switch over to the "real" drugs (without even knowing these weren't working) because they take a month to work. I also have an appt with the anxiety doctor in just over a week, so it will be good to already be into the meds so that we can be efficient when we discuss my treatment.

After recently managing to avoid my husbands cold (woo hoo!), I started the new meds. They wean on, starting at a low dose and gradually increasing to the optimum dose. The first day I experienced strong, unrelenting headaches, nausea, lack of appetite and fatigue. I was frustrated and upset because I knew if this lasted any amount of time it would affect my physical health since I couldnt' even do physio or move off the couch.. and hadn't eaten in 24 hours. I was worried that I was trapped in this loop of mentally being destroyed in order to be physically okay. Thankfully, it eased up fairly quickly and I'm now left with morning nausea, fatigue, and still the loss of appetite... Sounds like a lot, but I can push through this somewhat and I am hopeful it will lessen still.

There's not a lot more to report. This issue is bigger than any other right now, and as spring approaches, I am hoping with everything that I can go back to normal and stay that way very very soon.

New Life

This floating decision of when to list has its claws in me. I'm suffocated by it while still finding sources of denial strong enough to let me have a good time some of the time. Thank God for the survival instinct of the mind/body.

I've found such comfort in my home routine. Too much? Maybe. I spend the whole day managing a treatment schedule and fitting in things that feel 'useful' like say.... paying bills, emptying the dishwasher, or looking into if Apple will grant me all my songs back from my grape juice soaked ipod (they will)..

Today became a scheduled coffee date with old coworkers. I call them my "labbies" because we worked in a lab together before I left 3 years ago for CF reasons. I love them. They, interestingly, both don't have facebook. A fact that maybe is a big deal, or isnt', but to me it is because I get all of my outside world info from there. From there I try and help people. From there I have ups and downs and laugh at peoples jokes and share their lives and mine. Right now I can't seem to update my status about my outing because it feels silly. I'm being reminded of what life was before being this sick and homebound.

After 4 hours at a coffee shop, I feel drained. Headache, frequently coughing, thirsty (despite my hot chocolate from there) and weak. I did not wear my oxygen, but I brought it in labbie #1's car when I was picked up... for comfort. I worried about becoming anxious, as I do almost always now when going out. I wasn't sure if my excitement at seeing them would overcome it. It didn't, but I masked it as best I could and got over it quicker than usual.

Labbie #2 is pregnant. So is everyone else around me. That's why I called this post "new life". They get babies, I get lungs. We all get the same thing sort of.. but of course I'd trade in a millisecond. I want children so bad.

I still have gotten nowhere with my listing plan. Nowhere except that the doc's and I have agreed that at the very least, I must get a handle on my anxiety before I sign. I think this is the only way, and yet as proud and proactive as this new choice has felt, I know that theres' a part of me that celebrates simply because the earliest anxiety appt I could get was March.. and that means more time without being listed. I'm ashamed of feeling that way. I want to be brave and eager.

I suspect that spring is going to bring more and more confirmation that life is not what it used to be.. I need that. I need to see it often so that I can't deny anything anymore.

Answer

I'm reluctant to write this post at all because although I received my news, I am still in limbo as to exactly what to do. In hindsight, I guess I built up this news so big that I didn't think about how I might feel after getting it.

They want to list me.

The exact words were something like "we think its an ok time to list for you". The call was very short, and wrapped in her words were careful tones and gentle breaks that were meant for someone who is getting what they don't want to hear. In her 4 or 5 sentences she even said "we know how you feel about this.. so take your time, talk to your family, talk to the docs at stmikes, if theres anything you want to do, take time and do it. this is not urgent for you'. My dad actually spoke to her as well, and was told that it is common for patients to take 2-3 months to digest the decision and come sign the papers. I am not alone in my hesitency.

That said, a few things go through my mind at this time. First is an irrational suprise. I, and my family, KNEW I was close, but didn't expect this answer probably mostly because in august not only was I "too healthy for the list", but I was too healthy for them to even investigate me. I was not allowed to assess. Clearly that result was a mistake that probably was directly related to one single persons choice, but it doesn't make it mess with your mind any less and I am still quite angry about my emotional rollercoaster so far (and I know this is the tip of a very large iceberg!). I am not much sicker now than I was in August.

Another thing I think about is that a part of me knows I can't do another winter without being listed. I'm not saying I can't "do another winter", just that I know that by next winter, I wont be comfortable. I dont know why I get that feeling, but I do.

Another thought that goes through my head is my sisters pregnancy. I only wish she was due sooner so that I could with confidence tell the transplant hospital that I will wait.. 2months and see my neice/nephew and let my sister get through her pregnancy relatively stress free, and then go for it. Unfortunately for all of us, there are still 5 whole months to wait.


All of these things I'm saying will no doubt inspire opinions in my readers, and please be kind if you plan to share them in the comments. Please, even if advising me (which I am very happy to receive, don't get me wrong). Please word things carefully. I'm in an emotional place. This decision is never easy. We know what the risks are, and they are not small. I may make a bad decision. At the same time, CF is so unpredictable, no choice is decidedly "right". I could list now and be in perfect shape for my surgery. I could list now and still die waiting for my call. I could list later, get more pre-tx time, and be smart because I end up dying during surgery. I could list later and it could be the reason for my death. There simply is no "right", only stats, and odds, and experience with which to work with.

For now, I've decided that step-by-step is all I can do. I've been waiting for this news to book regular clinic. I'm not sure why I felt it made sense to put off clinic until I got the news, but I did. I am going to get in there ASAP, and work on talking to them about anxiety and what I can do in this difficult phase. I am going to get them to elaborate for me what I didn't get to go into detail about on the phone. I am aware that in many ways I am a super-ideal candidate, especially now, but basically overall. My blood type is A+, I am cepacia negative, I have few exaccerbations and ivs, and I have no allergies, intolerances, or CFRD. The one factor I thought I would have against me was my size. I am short, but I learned during my "news" phone call that my lungs are not small at all. Apparently they are 5L. I find this hard to believe, but it works in my favour. This is oddly my concern. I think if I were expecting a longer wait (I was told by the coordinator I would not expect that most likely) it would be easier to list.

The excuses keep coming to me but I realize I am on the runway and I must take off while the window is open. Please think of me and hope that I can find a way to make the right decision.

While I wait..

Still awaiting the call for the decision on my listing.

In the meantime, some close CF friends have had some big experiences lately (ranging from getting 'the call' to some terrible news while in hospital) that have me reviewing this crazy battle we fight and the love we share.

Here's the Great Strides walk VIDEO my sister created for my team back in 2009 on my birthday. She really captured every emotion I had/have in creating this and I'm grateful for this and her (& Taylor Swift for the suprisingly fitting song).

Enjoy.

No News is... still no news

Just a quick update to say I still haven't heard whether the docs think its time for me to list for transplant. I have, however, recently got to the point where I feel like I have done all the possible thinking/talking that can be done in "preparation" for this news. Nothing can be accomplished by this, of course, but its weird how one day I just woke up and felt that the obsessive thinking was over. Sometimes you just have to clear your mind, live your life, and let the world throw its punches.

Saying that, when the call comes I guarantee I will be shaking in my boots, and depending on the answer, will spend a great deal more time in a new thought zone.

In talking so much with fellow sickies.. I think I have begun to understand the usefulness of social workers/psychologists and the like. I have to admit, from a young age I was always wary of them. Maybe because at 12 I was forced to see one regarding my picky eating. Maybe because the whole psychology area already interested me at 12 and I felt that I was on an equal playing field. Whatever it was I didn't see the point. Sometimes, though, things don't need a definitive "cure". Sometimes if someone gently directs you to think something out in a new way, it makes it just a little bit easier to cope, or makes it fall into line and make a little more sense. And sometimes thats just enough to get you through.

Drama and more waiting

Most of the assessment is done. It's kind of hard to believe.



A year-long venture. More if you count my pre-planning. Being done is only part of the battle. The waiting now will be among the hardest mental things I'll do. Everyone says how hard it is to wait for the call. I've always been an anticipator. I worry before others worry. That's why I think I will worry most about if it is "time" now.



When my friend K was dying after contracting a severe strain of cepacia, I cried all the time. I remember in particular on Sunday November 9th my sister and I went to a backstreet boys concert. I cried at one particular song, ironically titled "you can let go". The next day, K died. My first close person ever to die. I was tearless. I spoke to his/our friends on the phone completely stoic. Not because it hadn't hit me yet, but because it had hit me way earlier. I wonder if listing will go this way for me. I have a month to wait to hear. Until then, I will tell my story of the drama of assessment. Here goes:



So as anticipated, the early mornings were the worst thing about assessment. I enjoyed our hotel, however.. which was a nice suprise at a time like this. The oxygen company, who initially claimed it would cost money to drop me off a concentrator, did so for free after some prompting and nothing at all went wrong with that. The worst test was the MUGA, as all my facebook friends pre-warned, mostly because it involved exercising while laying down. Also, though, because it was soooo long. I swear from start to finish that test was 2 hours AND involved 2 injections. This test proved to be the source of a lot of problems as the week progressed. Before I move on, and since the topic of this blog is radiation, I should also mention that when I went for my chest x-ray at 9:45am after my bloodwork on the first day, I was told I was "early" for my CT (12:30pm). When I corrected them, they proceeded to do the CT and chest xray back to back at 10am. That made me uncomfortable.... moving along....



I had noticed in the information book that the Bone density scan warns that it cannot be done within a week of a test involving radioactive dye. The dye test (VQ scan) was slated right after the bone density test, so that was ok, but the MUGA was the day before. The MUGA does not involve dye but does involve a radioactive tracer. I made sure to ask about this with the transplant coordinator when I arrived on the first day. She reassured me that it was fine, as I expected knowing that all of the pre-transplant CF'ers do this same regime. That final test day came, and when I was filling out the consent form for the bone density scan, it asked me 3 "important" questions, and one was a variation of the radiation question, this time no mention of the word "dye". I spoke with the bone density technician to be sure, and she was not completely secure with me doing the test but said that 90% of the radioactive tracer should be gone by this point (24 hours later) and that she could "test" scan me on the machine before completing the test. I thought about it and agreed, and the pre-scan apparently showed no remaining radiation.



Fast-forward to 3 hours later and the VQ scan. Of course this is the longest hallway ever too. We arrive and I walk in, and the guy says "this will be a very short test, about 7 mins". I reply that that is wonderful because the MUGA scan I had the day before was forever. At this point he gets a horrified look on his face and says "you can't do this the day after that test!". I'm basically trying to form words at this point as I try to make sense of so much miscommunication and disagreement between supposed medical professionals. He walks me to the machine, and shows me a screen, apparently doing what the bone density woman had done that morning. His screen lights up like a Christmas tree with my torso, and I almost burst into tears at the realization that I can see the radiation and have no idea what the right thing to do is. He and his sidekick in VQ scanning both reassure me that I'll probably be fine from the earlier bone density scan, and that no, I cannot do this test right now because of the radiation still inside me. They may have said something about risks towards my heart as well. I march to my husband and we march back upstairs to speak with the coordinator, 2 hours before we're supposed to be there for the final meeting with the dietitian.

Upstairs, the secretary gives me a disgruntled look as she contacts the receptionist in charge of the coordinators business.. this woman, after 25 minutes of us sitting waiting (with me worrying and saying things like "I'm supposed to trust these people to save my life?" under my breath) comes and says "they were wrong, it wouldve been fine, but we'll reschedule it for next week". I'm sure it was fine... after all the hundreds who have gone before me I certainly can't be the first to discover such an apparently huge problem. All I know is it left a horrible taste in my mouth, has me visiting two separate hospitals on a snowy day this week, and that if I ever get cancer I'm always going to think about the assessment where no one seemed to be on the same page.