Day 1728.....uh its been a while

Hello.... Hello..... Is this thing on...
Oh I there! I'm back!  Sorry, it has been soooooooo long, I was just keeping you hanging as all good storytellers do :P.  Nah actually I have been rather busy these last few months with moving, starting a new job, getting a new schedule, seeing the doctor, medical treatments....oh and a puppy :D.  Well, that about sums it up,
Until next time.






I guess I could give you a little (or a lot) more detail.  When we talked last I was in the hospital getting pumped full of bunny immune cells.  Well I am hoppy ;) to report that I am still human and going about my life merrily.  Unfortunately, the rATG did not work but I did not have any major side effects so that was a bonus.  Plus now I know what it is like and that it is not that bad, at least for me. I had a fear of getting rATG pretty much as soon as I heard about it pre-transplant, yet as with all my fears they turn out to be not so bad and the things that suck are things I never really saw coming.  Trust me I know from experience God really meant it when he said "DO NOT BE AFRAID". There really is no point it does nothing but get us all worked up, steal our present moments and lock us in a box of fear.  Everything I have ever been afraid of happening that has happened was actually okay, there was no reason to get all worked up.  And yet God also knew what he was doing when he said it over, and over, and over, and over, and over, and over, and over .... okay you get the point.  Not being afraid is something I have to constantly remind myself.  My latest mantra is the little bit of the song "don't worry, about a thing, cuz every little thing is gonna be alright" and it is true!

Alright, rant over!  Anyway like I said the rATG did not work. I went back in February only to discover my lung function had dropped a bit more.  This time there was no evidence of infection so the doctors were pretty certain it was from rejection and likely, chronic rejection.  They went ahead and did a treatment called campath.  I had heard about this fun med a few times before, from other transplant recipients and knew that it is a gnarly drug that basically wipes out your immune system for at least a year :O.  But at that point in time my doctors felt that it was my best option and really the only tool in the tool box against my (Joe's? Freddy's?...)lungs.  So at the end of February, I was shot up with the stuff.  And....... it seems to have done the trick. So far I have had one appointment since and everything was stable.  I go back in about two weeks and will see if these lungs are holding out, but until then I go about my life.

Having chronic rejection really has not changed my life much.  There are days where my breathing kinda sucks, a bit like before transplant and I am WAY more tired all the time and I definitely can feel the lack of function when I try to do anything physical, but other than that life is dare I say... normal.  I am working, paying bills, shopping at target... you know all the adult stuff. It is pretty easy to forget that there is a ticking time bomb inside of me.  Honestly apart from the lack of lung function things really are the same as before I got rejection.  Rejection is pretty much a guarantee at some point for us transplant folks and if we do not ever get it, it simply means we died of something else first.  So for me, the biggest difference in having rejection is that I know I have it rather than waiting for it to show up.  I can also work on mentally preparing for a second transplant as that is likely in the nearer future than I would like, but who really knows there are people who live years with rejection (by the way when I refer to rejection in this post I mean chronic rejection or Bronchiolitis Obliterans Syndrom (for those google crazy folks ;P), as it is sometimes called, similar name, but completely different disease than acute rejection).  So I just keep on going.  Waking up each day and living it to the fullest.

This new, or really old, way of life for me has made working a little bit hard. I enjoy my job but I would also love to be off traveling the world and spending time with my family and friends and when I try to live each day to the fullest, being stuck at work kinda does not really fit into that plan.  I am currently working as a behavioral health tech at an independent living site out here in Phoenix. What that means is that I work with people who have mental illness and a history of substance abuse learn to live the life they want.  I would not say it is the most rewarding job ever as I literally have the same conversations with the same people about the same issues day after day after day, but it is nice that I get to have a small part in making someone's life better, and... I have three days off a week!  I am also in the process of starting a new job.  It is with a company called VIPKID and I will be teaching English online to Chinese kids!  The best part, I set my schedule and can teach anywhere where I can get internet access, meaning I can teach and travel.  For now, I am working on building up my client base but I hope to one day make this my fulltime job and have more freedom in my schedule.  If you are interested in signing up or learning more you can use my referral link here ( I do get paid an incentive if you sign up, but I am really just sharing this as I think its a pretty cool way to make some extra money. You do need a degree but that is about the only requirement)  I am very early in the process and have yet to teach an actual student but I have my first real class tonight! Wish me luck!  I'll let you know how it goes.

Besides that, I have been trying not to melt in this ridiculously hot weather here.  You do get used to it and it is true it is more tolerable as it is a dry heat but man is it hot, for instance, yesterday it got up to 115 :O.  The hardest part is it doesn't cool off at night so there literally is no relief. Oh and I'm forced to go out in it to take my puppy to pee, yup I got a dog.  She is very sweet, fairly calm and much more suited to weak lungs and apartment living then pepper was. Her name is Islay (pronounced eye-la).  If you are a scotch fan you might recognize that name :P.  She is psycho and does not seem to mind the heat.  Her talents include jumping on and in everything, like a cat, chasing balls, laying in the middle of the road, being super cute and speaking Spanish!  She definitely brought a needed friendship to my life as I have been pretty sad and lonely out here in the desert.  (Get it, it is a desert for real but also kind of one metaphorically :P)

Well that is about all that is going on with me.  I will try to keep this thing up more regularly!  I hope you all are doing well.  If you have any specific topics you want me to cover, let me know in the comments.

Until next time
Your friendly neighborhood Lemon ;)

P.S. I've been thinking about doing a vlog (that is a video blog for those less techy types) any interest in watching that?  My biggest hurdle currently is how silly I feel talking to myself and a camera!  But we will see I think it could be fun!  Plus it is like all the rage and who am I if not a cutting-edge trend follower :P.

Day 1059

     The day has come.  Today, October 12, 2016, marks 3 years since my transplant and basically 2 years since I finished chemo.  Wow!  Has it really been 3 whole years already?  It feels like it was just yesterday.  At the same time, lengthy pre-bed treatments, tube fed meals, coughing, lack of appetite, burning lungs, beeping IVs, oxygen tanks and an overall struggle to survive seem like a very distant memory.  I almost can't remember my life before transplant, almost.  
     Making it to 3 years is huge.  About 40% of my fellow transplant patients don't make it this far.  It is not just a statistic but something I have seen play out.  I have seen the dreaded message about a friend needing prayer as they take a turn for the worse.  Many tears have been shed as those battles come to an end.  It is an interesting experience to see friend after friend suddenly go downhill all while I am sitting here fine.  It is confusing, on one hand, filling my head with the why me's of survival and yet, it is also calming.  There is an interesting peace that comes with knowing, truly knowing, how fragile and temporary life truly is.  At any moment it can be taken from me, from any of us, and the thing is, there is nothing any of us can do about it.  
     So what do you do with this information?  You live.  You find what matters, what is worth your time, what makes you happy and fills you up and cut out what doesn't.  You fill it with adventure, with fun and laughter.  You fill it with people in community sharing struggles, joys, laughter and pain.  You say yes to opportunities and try not to let worry about the little things stop you from experiencing the big things.     
     3 years means I have lived 3 years longer than I was supposed to.  3 years means I have gotten to experience almost 3 years of "normal" life (all except that little cancer blip, two years ago).  I have had 3 years to share laughs and play games.  3 years to be silly and make up songs.  3 years to pull all-nighters full of good conversations.  3 years to explore this crazy planet and go on spontaneous adventures big and small.  3 years to meet people and make friends and I've loved it!  
    I won't lie and say I have enjoyed every minute but I have definitely liked a lot of it and I wouldn't do it differently if I went back.  These last 3 years have been some of the craziest but also some of the best years of my life.  If 3 years is all I get, I know that I lived those years to the fullest!  And, if I get more time, I plan to keep on living it, one day at a time because, honestly, that is all any of can really do!      
     This year to celebrate I am going somewhere to see my human smallness and fragility in a more tangible way, under the stars and the rising sun, surrounded by good friends, with an early morning trip to the Grand Canyon!  Until next time, get out there and live!

    

The Other Side of Travel

Somebody get that girl some hand sanitizer!

Recently I had the amazing opportunity to go on a 3 week long adventure through Europe.  I shared much of our journey on social media. Social media is a great place where we can catch up on people's lives and live vicariously through them, but it is only half of the story.  The pictures shared show the happy times, the beautiful scenery the best parts of our lives.  Just as you can cut the dumpster out of the picture of the beautiful gardens at Versailles, you can cut the hard life moments out and paint an almost fairytale picture of a very real experience.  Well I'm coming clean, maybe not completely clean this is not true confessions, (if you want juicy tidbits I'm not your girl!) I will give you a slight glimpse into what a trip is really like for a lemon and what it takes to make it happen.

Behind the smiles, before the yummy food, along with the awesome memories, is a world of pills, sanitizer, finger sticks, tons of luggage and a bit of extra planning.  It can make the difference between an enjoyable trip and a health nightmare (though as stated here, no amount of planning can truly prevent that).  It is the world that exists behind the scenes that makes travel possible for a person like me, a person with a chronic illness.  Unlike my healthy counterparts, I can not pick up and go in a moments notice, my travel essentials won't fit in a small backpack, spontaneous trips can't go on and on, they can only last as long as I have until my next refill. 

On this most recent trip what you didn't see was the half hour or so we were stuck at the Borghese Gallery because my body suddenly decided to make a whole bunch of insulin and crash my blood sugar, which took forever to come back up, or the amount of room in both my suitcase and carry on that was dedicated to pills and extra supplies,  It was a lot!  Basically my entire carry on and a quarter of my suitcase.  I would say this might be the hardest part for me because I hate having tons of stuff with me, I like to travel light.  In fact before my transplant I never used a purse, I was a pockets girl, if I couldn't fit it in my pockets I didn't need it.  Well now the amount of stuff I have with me on a regular basis could put a diaper bag to shame (okay maybe not that much, but in do have a ton of stuff I have to carry around.).  Trips, especially out of the country trips, are extra hard because in addition to my regular daily amount of supplies I have to be sure to bring plenty of extras in case something happens.  For instance on this latest trip I was gone for 24 days which is a lot of pills, but I also took an extra 6 days of supplies with me just in case.  So for this particular trip that amounted to over 1000 pills!!! Then there are all the supplies I need for my diabetes, pump sets (which come

in two parts), extra batteries, insulin (two kinds and an extra bottle of each), syringes in case my pump fails, lots of glucose test strips and of course alcohol wipes, tons and tons of alcohol wipes.  Then there are the quick sugar snacks I need for the inevitable blood sugar crashes.  All this takes a bit of planning since I need to make sure I have enough supplies on hand to get through the whole trip.  In addition I get an antibiotic to bring just in case and I also almost always have a mask, wipes and handsanitizer with me.  

Believe it or not this is what is left after 2/3 of the trip!  And it's only my pills, well and two pump parts.

On the trip itself there are usually a few times my health issues get in the way, I wouldn't be a true lemon if that wasn't the case!  This particular trip was no exception, although I think it was the smoothest trip health wise I have had.  I had energy most of the time and felt well enough each day to participate in the activities, despite getting sick less than a week in.  On my last trip to Europe, I stayed behind a few days because I didn't feel well.  This time I really only skipped out on one evening, which ended up consisting of walking to a place for takeout anyway. 

What were those lemon moments you ask, well like I said, I ended up getting sick pretty much right of the bat.  I guess looking back on it, it was kind of inevitable as I was around the most people I had been all summer when my immune system was at its lowest, my rejection treatment ended up happening days before my trip.  Luckily for me it seemed to be a quick bug as one evening of rest and a slower day following it were enough for me to mostly recover.  

My blood sugar proved to be the biggest issue on this trip.  The previously mentioned rejection treatment has a tendency to cause my blood sugars to get way out of wack and this time around was no exception.  I went from having extremely high sugars one day to crashing multiple times the next.  These crashes caused us to have to stop in a few places while I waited for my sugary snacks to kick in and allow my legs to regain their solid human status instead of the limp noodle like state given to them from the lack of sugar (cell energy) in my blood.  The Borghese Gallery being one of those places.  I also had a lovely crash while eating gelato!!!! (um... WHAT, crazy body gelato has sugar!!!)

Little did I know in this pic my blood sugar was crashing rapidly (quit wasting your time with pics girl, EAT THAT GELATO PRONTO!)

The Great 2016 Gelato Crash!

In addition to the interruptions, there are a few challenges of traveling, especially to another country with some unique needs. First of all I am sometimes limited in what or where I can eat as I have a few food restrictions and need to be extra careful about cleanliness and food safety.  An example of that, the sandwich. A staple it seems in most countries' diets and quite easy to find, yet if it contains any meat and is not hot I can not partake.  The other challenge I find when being abroad is knowing the carb content of my food.  You would think that  almost 3 years of having to count my carbs every time I eat I would be an expert at knowing the carbs per serving, but my friends you are mistaken, I SUCK at carb counting.  This is one area where technology has been a detriment.  Instead of learning carbs I rely on nutrition labels, online nutrition information and good old (new?) fashion internet searches.  Well my friends when the nutrition label is in French, a serving is listed per 100g and access to the internet costs more than college, you get some pretty interesting and highly inaccurate carb counts.  I mean does anyone know what 100g of gelato looks like???  Add to this that many packages did not include the amount of grams in them, forget being able to be like oh 100g is 1/3 of this 300g container.  Chocolate bars we found in the grocery store in Paris turned out to be my favorite nutrition label as there was literally a picture showing what a serving of the bar looked like along with the carbs found in it!  Luckily the word for carbohydrates is pretty easily identified in all of the languages we dealt with on the trip, so you know, it could have been worse.  Plus I had my continuous glucose monitor (learn more about dex here) which helped immensely as I could catch my highs or lows most times before they became a real problem!

Despite the challenges, traveling is great. It has been a while since I had been on a sightseeing type trip and I had forgotten how much I love it.  I get too comfortable in my known daily routine that I forget the true thrill of traveling!  My adventurer spirit has been reawakened.  I can't wait to get on to more windows! 

Here are a a few pictures from the trip:

A letter to the Show Biz Peeps

Dear creators of Red Band Society,
   I watched the show and I was kept entertained.  It has a fun group of characters and is interesting to watch.  I also agree with the message that you can still have fun and be happy despite having an illness.  However it is completely unrealistic and that is a huge problem.      
     Please make your show realistic or please take it off the air.  As a Cystic Fibrosis and Cancer patient, who has also been kept in a coma after my lung transplant, and who as a child stayed on the same floor as (and even sometimes shared a bathroom with) the eating disorder patients I beg you to make a change.  You are doing a huge disservice to the medical community especial that of Cystic Fibrosis(CF).
    Cystic fibrosis is a disease that does not get a lot of air time.  The CF community has been very excited about what this show could mean for us.  Unfortunately I do not think anyone thought it would be bad, but it is.  Before CF was brought into the main stream when I told people I had cf they would be curious and ask what it was.  I then would have an opportunity to educate them on  this horrible childhood disease.  However, since the show people have heard of CF and think they know what it is.  Well thanks to the poor portrayal people will now assume it's not really a big deal, I mean Dash seems fine and he's at his worst since he's in a hospital, right?   Wrong so very very wrong.
     Having CF is horrible, you can't breath, you can hardly eat and you certainly aren't running around a hospital stealing cars and throwing helicopter pad parties.  If you are one of the "lucky" cfers to not have bad symptoms, you aren't in a hospital.  A real cfer in the hospital is weak, very thin, tired, struggling to breath and has a productive cough pretty much all the time.  Most are also on oxygen and all are on iv medications around the clock.  We have what is called a PICC line inserted in our arms for medication or a port if our hospital stays are long enough.  Hospitalized cfers also do neublizer treatments, which was shown slightly, and vest treatments several times a day, 4 in my case,  these treatments can last an hour or more and are given by respiratory therapists.  Many of us also have feeding tubes and are fed a special formula by a pump at night to help us gain weight (like I said we are super skinny).  In most cases hospitals have strict infection control rules for CF patients we are often not aloud to leave our room and in the cases where patients can leave they definitely must be wearing a mask.  This goes for cancer patients as well.  Both of these diseases allow a person to catch illnesses easily, cancer from the chemo and CF from all the mucous in the lungs, and hospital are basically one giant petri dish.
     I understand what this world (hospital life) is like and I know it would not make very good tv.  That being said it is still possible to have an entertaining show while portraying some realistic aspects of the disease.  First of all the patients need to dress down a little bit, this is not high school, it's a hospital.  We don't do our hair or wear make-up and nice clothes.  More like hospital gowns, pajamas and sweats and a messy pony tail (if we have hair, I now where hats!).  Yes we hospital kids often decorate our rooms but not as excessively as the one on the show.  Coma kids are definitely in a hospital gown and hooked up to a few more monitors.  Also hospital patients are there for a reason, meaning they get treatment, ivs, oral medications, monitoring vitals etc.  And last but not least (and probably not really the last problem either)  Sick kids wear masks, kids who can get sick easily also wear masks.
   So please help all of the children who actually live in hospitals by portraying their life a little more accurately.  Without some changes kids will be jealous of those of us who "get" to go to the hospital.  Having a chronic illness is nothing to be jealous of.    
                     Thank you Very Much,
                         Anna the lemon
       Cystic Fibrosis, Lung Transplant, Diabetes and Lymphoma
P.S. Leo's eyebrows are pretty much the bushiest eyebrows I've ever seen.  If he is that bald on his head you bet his eyebrows are at least somewhat thinned.

Seeing the shadow

The time has come to learn my fate for the next 9 weeks and unfortunately they will include three more hospital stays. Yes this cancer groundhog saw it's shadow. The good news is that my cancer is responding to my chemo, just not as much as I had hoped.  Its a bit frustrating because people (especially my mother) sees this as good news.  And it is, especially for them, I'm getting better.  It is not good news in my eyes.  I know I should be happy that I am getting better because it could just as easily be the other way around, but I am mostly disappointed because this whole 5 days in the hospital every 2 weeks has gotten old.  I guess my challenge for the next 9 weeks is to remain positive even though things aren't going my way, they could always be worse.  At least I am improving  and I feel pretty good.  Plus I get to do my chemo in CO so I can actually be at home between treatments.  That's all for now folks!  

The listed list

Not much has been happening in medical transplant world lately, or in regular world for that matter (hence my lack of posts, well that and pure procrastination!) I have realized I never posted a hospital packing list.  I looked for this myself pre-TX but never really found one and thought I should make one for my fellow TXers, so here goes

Once listed pre&post TX hospital bag

Blanket (it's nice to have a soft one the hospital ones are often kinda scratchy)

Note: although for a normal hospital stay I would suggest bringing your own bedding (pillows, sheets, etc.) in the case of a transplant I wouldn't recommend it.  The bed gets pretty nasty from all the blood and goe that it's better to stick to a blanket and maybe an extra pillow that you can easily move out of the way and use the hospitals bedding for the rest.

Soft washable pillow

Pull ups or depends (I would recommend for anyone, it's hard getting to the toilet and this provides some protection if you don't quite make it!)

Pics for the walls (it helps liven up the room plus if you go crazy like me, pics can remind you of the world out there you are trying to get back to)

Eye mask and ear plugs (if you can sleep with that sort of thing.  I personally hate them and would rather deal with the light and noise)

Good shoes for walking

Slippers or easy to get on shoes

Sox

Hairbrush

Hair ties

Chapstick

Toothbrush

Toothpaste

Safety pins (great for keeping that gown closed during walks)

Clothes to go home in

A few things to do

(Don't go crazy in this department, most of the time I was either not up to doing anything or my brain was just too confused to really do something)

     Some ideas are:

          Coloring book

          Book

          Music

          Bible (if you are spiritual)

          Simple craft

          Small simple puzzle

          Card/board game

And most importantly a new fan

I got soooooooo hot after my transplant I used up all the ice packs in the ICU before my parents went out and got me a fan.  I loved that little fan so much!  My family laughs about it now because any time anyone got in the way of my fan I would motion to them to move ( about the only firm motion I could do!)

I think I got the basics covered.  If I come up with more I'll make an amended list. The thing to keep in mind if you have been in the hospital a lot before is that a transplant hospital stay is like nothing else you have probably experienced.  It is very very different from a typical CF "tune up". I usually feel decent most of my tune up time and have energy, the motor skills and the mental capacity to do a veriety of activities.  During my transplant stay I hardly had the motor skills to surf Facebook and no where near the mental capacity to comprehend what I was doing!  Stick to simple and comfort when packing for the hospital.  Your days will probably consist of sleeping, procedures and of course walking, walking and then some more walking.

A few other hospital tips:

In case you aren't already aware don't bring food, you most likely won't be able to eat it and it will just sit there tormenting you.  If you are lucky enough to eat while in the hospital you can send someone out to get you food once you know you can consume it.

Ask a nurse if the hospital you are at has a medical cosmetologist.  They will come and wash, cut or style your hair.  I had this done twice and loved it both times.  It is so hard washing your hair in the hospital even without having had surgery, yet having clean hair does wonders in helping you feel better!

Me after my second shampooing!