Thank You Gunnar Esiason- Dating Life with CF

First and foremost, thank you Gunnar for taking my question I had about dating with CF and answering it.  He did an excellent job giving his opinion on the situation that many of us with CF deal with.  For both question and answer, please check out his Blog  It was the Friday, May 1, 2015 topic.

To add on to this subject, I would like to congratulate my parents, John and Eileen on their 30th wedding anniversary this past Cinco De Mayo, May 5.  30 years ago Tuesday, they said "I DO" and God Bless Them, because they had no idea what they were getting themselves into after that. Marriage seems to be hard enough, but throw in two kids, one healthy and one with a chronic illness and a job that requires 24/48 hours on then off and its amazing they stuck it out.

Jack( my brother) and I surprised them with a party.  We had around 50 of their friends join us for dinner at Hackney's in Glenview for burgers and a gathering.  Honestly, my parents have so many incredible friends that my brother and I had to cut the list to just 50 because it was growing so quickly.  Might I add that not one person said no to the invitation, including family and friends from out of town!  They flew in especially for my parents party, and for this surprise.  I feel so blessed to be their daughter because of such wonderful caring people they have been friends with over the years.  We were able to get their entire wedding party back together for the night, and I am so mad now because I don't think we ever recreated their "wedding" photo.  I guess we will have to all gather again for it another time!

Although I was a little stressed the week before the party, I had reason to be.  I was planning this event from the hospital.  In between treatments and sleep, I managed to call their friends and make sure this would be the surprise of a lifetime.  My parents deserved it!

Of course, I am feeling better now and the two week stay in the hospital went better then expected.  I was able to get some rest and come out of there feeling refreshed.  I was proud of not going too stir crazy and taking it out on the residents/my doctors.  (For anyone who has ever taken care of me, I apologize because sometimes I can get a little feisty)

Anyway, I also want to address my question to Gunnar about dating life.  If you have not had a chance to click on the link to Gunnar's blog (you should) but in the mean time I will paraphrase my question to him.  Basically, I wanted to know how and when to tell someone you are interested in that you have CF without scaring them away, or making it seem like you were hiding something from them.

Growing up in grade school, there were 3 families in our parish that had children with CF.  We hosted fundraisers and the community was pretty aware of who we were and everyone in my classes knew I was one of the kids with CF.  Luckily, I was not really sick, in fact, I only really missed school when I had doctor appointments and sometimes to stay at home when I had a cold or the flu- but no hospitalizations.  So I never had to say anything to anyone, because everyone knew- or if they didn't someone else in the class would tell them for me. Easy!

High school was a little different, but not too bad.  I went to Loyola where maybe ten to fifteen of us from grade school went.  In the beginning, everyone stuck with people they knew, because everyone was new and scared to branch out.  As new sports and clubs and friends were made, I did start telling people about my CF.  During my freshmen year end of first, beginning of second semester I was hospitalized for the first time ever, and it was over 3 weeks.  My teachers were very supportive and told my classes about CF and why I wasn't in class.  They were also very sweet because some teachers made the students write me cards.  I remember thinking it was weird that I had a card from someone I didn't even know yet,but I also thought it was very sweet.  Anyway, I think word got around that I had CF and it wasn't a big deal.  I came back to class, and was the exact same girl as before, only more people knew I had CF now.

College again had that new aspect to it where I would be meeting so many new people and had the option to be open about CF or closed.  Looking back, I wish I was more open.  I joined a sorority and did not tell many of them until I was in the hospital, and even then I just said I didn't feel good and couldn't make events- did not tell them I was in a hospital room on campus.  As far as dating goes though, a friend from high school introduced me to his friends and I began dating his roommate.  I told him about CF, but I think he had already known because of our mutual friend (his roommate).  Again that made it easier because it wasn't completely out of left field and because his roommate didn't make a big deal about it, just said you know she coughs and gets sick sometimes and has CF but she is still the same girl, I honestly think my boyfriend at the time handled it very well.

Flash forward to now, being 25 and going on casual dates with guys now.  My CF has also progressed (keep that in mind) so I cough more often and it sounds worse.  Also, I can't laugh anymore without coughing, or almost wheezing and gasping for air.  Although my friends are used to it by now, newcomers think I am dying.  My face turns red, I am leaning forward, coughing, gasping for a breath in between the giggles, and it sounds like Im a 90 year old smoker.  After that a coughing attack might ensue.

My favorite show (Friends) captures how I look and feel:

*Found off Google Images*

Most guys I meet are sweet about this, and say something to the effect like "oh sounds like you have a bad cold"  I play along and say yes.  But if we hit it off, and another date takes place a week or more later, that "bad cold" is still there.  I am hoping they don't think I am contagious, because I am not, but I also know this is NOT the right time to tell them about CF.

It's complicated, and I know with every person it is different.  One first date someone asked how long I had been a diabetic because they saw my pump, I thought I did a good job hiding it under my shirt, but I guess some of the wires popped out and might have given it away.  With that conversation, things got pretty "deep" quickly and I remember telling him about CF at that point as well.  At the time, I thought it seemed right and I was upfront and honest.  Ironically, this was the same person that a few months later told me he couldn't date me anymore because he needed to be with someone who had a life expectancy beyond mid 30's.  (Thanks D-bag)

Lesson learned on that one, maybe being up front and honest wasn't the best.  But I can't help it, I hate leaving pieces of my life out of conversations because CF is a part of me, and I have had so many wonderful opportunities because of it, and not sharing it feels like hiding who I really am.

So I was presented with another opportunity to be upfront and honest and I went for it again, and it paid off.  I had been on a first date with a guy and things went great.  We talked for hours after the date and then continued texting even the rest of the night.  We agreed to have our second date for the following Saturday.  I was looking forward to it, but of course Friday night rolls around and Ive got a fever and coughing blood, so to the ER I go.  Knowing very well I had an infection and would need to be admitted, I was upset about my date the next night.  I had two choices Saturday morning: 1) Tell him "Something came up, and I can't hang out tonight as planned" 2) Tell him I had CF, I got sick and need to be in the hospital for a while, but that he is welcome to come visit.
Plan 1 seemed ok, but lets be honest, it sounded like I was flaking on him last minute and I wasn't really interested in him.
Plan 2 seems extreme but showed that I wasn't lying and I did want to see him, but I really couldn't.
I went for it: I told him a little about CF and that I was in the hospital and he was welcome to come and we can get food and have our second date there.
He showed up with dinner for me and we spent the rest of the night(in the hospital) talking about everything, including a little more about CF so that he could understand some.
That was one of the best decisions I've made.  We dated for a while, but decided we are much better as friends and remain very close to this day.  (Yes, I know you read this blog, and I know you know who you are) :)

So lesson learned on that one as well.  Sometimes being truthful and honest does pay off.

I know this topic is very touchy and hard for everyone involved.  Can you imagine meeting someone and hitting it off so well but then they basically drop a bomb saying they have a chronic illness?  Not only that, but for those of you with CF or who live with some with CF, you know there is more than just the WebMD complications that go along with this disease.  We also know that looking it up on Wikipedia is the WORST thing ever!  Please tell anyone who wants to learn more about CF to ask you about it rather than looking it up, no matter how uncomfortable they might feel.

I have learned that it doesn't only apply to those with CF but other diseases, complications, or ailments that there is no standard definition.  What may be true for one person, might not be for the next, even if the disease or ailment is the exact same.  That is what is amazing and complicated about the human body.

Looking back at my original question though I respect what Gunnar did by asking some of his exs if they ever thought of him as just his disease or as himself.   The consensus is they all saw him for himself, and the CF was just something that came along for the ride.  That is the way I need to approach life.  I am who I am, and my future dates can choose to like all of me or not, but I cannot and will not change who I am.

So if any of my old dates, rendezvous', encounters, flames or anyone want to chime in on this topic, you are more then welcome to message me privately and let me know what you really thought of me in terms of CF or dating someone with a chronic illness and how you were able to look past (or weren't able to look past it). 
No hard feeling, I promise :) 

As for now, I will keep playing it by ear and find the right time to share my true story with people but I am much more open to sharing my illness and educate people on what Cystic Fibrosis is.  It is nothing to be ashamed of or upset about.  Yes, it sucks and yes I have cried and will continue to cry more than you can imagine about having it and getting sick but it has made me who I am.  I am a fighter, I am feisty, I am funny and (apparently good at alliterations) I am this way because of CF.

Bring it on!

Again, thank you Gunnar for responding to my email and opening up the world to this important topic that many of us with CF, and many others with other invisible illnesses deal with.

Thank you Gunnar

I will be adding a new blog within the next few days, but in the mean time I would like to Thank Gunnar Esiason for addressing my question in his last blog post, and introducing some of you to my blog.

Please check back soon for an update.

Thank you,

Katie

New Year, New Me!

New Year, New Me- only took until March!

At the beginning of every year, everyone makes resolutions.  For some it lasts 24 hours, others maybe 24 days, the few 240 days, and "lucky" 365 days or more.  I have figured out, its not luck that gets them there, its determination.  Of course, I started out with a few resolutions of my own.  The likely, and very unlikely.  If you know me at all you know I have already broke them all.  Hah- not because I wanted to but because I "choose" to give up.  For one reason or another, I found them too difficult.  For example, one resolution I had (quite simple in the grand scheme of things) was to keep my kitchen table clean.  I have the habit of making it a dropping ground no matter what it is.  My resolution to keep it clear lasted a week give or take (ask my roommates, Molly? Hanna? I am sure they noticed.)  Keeping a table clean should be a simple task so why only a week?  The idea of coming home from being out and immediately hanging up my coat, putting my purse away, or attending to the mail seemed so overwhelming so I left it on the table, and "would get to it later".  Haha- later never came.
I sit here three months after New Years, and my table is still full.  I have medicine bottles all over, a container of clean nebs, two books, a purse and some papers.  All of which have a place they all belong but why put them away when I can just leave them on the table and "get to it later".

Another resolution I had was to start taking my health seriously and actively fight for it.  Again after a few weeks (not to mention battling the flu, and typical winter colds) I gave up.  Doing nebs twice-four times a day, doing the Vest up to 2 hours a day, taking my pills, refilling the case, checking my blood sugar, taking insulin, wearing oxygen at night, exercising and who knows what else was overwhelming so one by one things (important) things started to drop.  Four times a day to do nebs became once, doing the Vest 2 hours a day became 24 mins, checking my blood sugar before all food or drink became only when I felt sick.  I "convinced" myself I was still doing the bare minimum and that was fine- but is it really?  One of Marriam Webster's definitions of fighting is as "a struggle for a goal or an objective".  Right away it says "struggle", not easy.  Because fighting for my life was going to be a "struggle" and not just handed to me, I gave up.  It isn't the "luck" I need to make it through my resolution, its determination.  Marriam Webster's also defines struggles as " to proceed with difficulty or with great effort."  A synonym for determination, which is "a quality that makes you continue trying to do or achieve something that is difficult."  Full circle.  Fighting for my life would be a struggle which meant it would be difficult and in order to achieve something that is difficult- I needed determination.

By maintaining the bare minimum, it was only a matter of time before I got sick again.   I know what you're thinking- "if you just did what you were supposed to, you wouldn't be in the hospital."  I wish.  I have been compliant (before) and it was only a matter of time before I got sick too.  I wish it was more black and white, just do what you're asked and you won't have any problems.  Unfortunately, that is just the nature of the disease.  It does what it wants.  I have had procedures which are supposed to stop the bleeding in my lungs and allow me to breath without coughing up blood.   Not even 10 days after the procedure, guess what came back?  I hadn't even had a chance to "mess" that up.  I was still in the hospital under doctors care where they were taking care of me and I was compliant.  But again the demon of the disease has its own agenda and does what it wants- no matter how much you cooperate.  Granted, all the advances in medicine and all the therapies and drugs they want me to take are the reason the median age of adults living with Cystic Fibrosis has risen to 37.  But unfortunately there are cases where you can do everything that is asked of you and the disease still wins.

I know I have a lot of room for improvement and have a chance to "have a normal life" but in reality it will never be "normal"  First, age 37- that sounds amazing in the world of CF but think about it for a minute.  37.  For those of you who are my age, I bet you can't even remember when you're parents were 37 because it was so long ago.  (No offense parents that are reading)  Now a days life doesn't even begin until later.  I mean that compared to previous years.  People are going to school longer, waiting longer to get married or have kids.  "You only live once" Make the most of it, why rush it. Savor every minute.  In 2013, the average age of death in the US was around 81 for women.   (Again anyone who knows me, knows I can't do math but) That is MORE then less of half of a life.  -56% to be exact (thanks James) 56% less of a life then the average person around me.  Yes, we should celebrate the HUGE progression modern medicine has made in the past 20 years but its hard to fight and find that determination when you feel like you are being cheated out on so much to begin with.  Even if I gave 100% of fight and determination to fight CF and everything along with it, at best I have "half" a life.  Yes, life is what you make it.  Yes, there is nothing better then a good hardly laugh  (everyone knows I am capable of that) and the feeling of being on Cloud 9, but in the back of my mine the number 37 is always there.  I know statistics are just numbers but for me they have always been the elephant in the room.  Growing up when friends asked how do you handle CF and knowing you have an age limit, I always used to say I don't think about it.  I also would say I might have one, but you don't know yours.  Not to be dramatic but you never know what tomorrow brings and if you will pull a "Regina George" and get hit by a bus.  Life is not guaranteed.  In all honesty though, I thought about it.  At age 12 though, anyone in their 30's seem old.  As I got into my teens, 30's were still far off but I often thought I am at the half way point.  25 years old, and reality starts to set in.  Yes, the average age increases with every new therapy or drug that gets approved but without a cure the elephant in the room remains.

The advances in modern medicine are amazing.  I have seen friends who were gasping for air, hooked up to oxygen day after day, wake up the next day breathing on their own for the first time in years.  Transplant has made that possible.  Taking a donor's healthy lungs and replacing the scared, mucus, infected lungs of a CFer gives them a new lease on life.  Transplant isn't a cure or a fix.  Problems often follow in a new way.  Transplants are difficult and are a struggle and it takes A LOT of determination to get through them.  Something I will be challenged with again (if I choose to go down that path).

OK so enough on my philosophies on life- where is my health at now?   Ironically, I have some of the highest PFT (breathing tests) numbers I have had in a while.   To put it in perspective I am around 62% lung capacity for someone my age/height.  62!!! Beat that CF, (and my doctors)  If I was to go to a lung transplant center right now with those numbers, I am pretty sure they would laugh at me and say you must be joking if you think you need a transplant now.   While that is just a theory based on my PFT, there are other things that are being considered that might not be so transparent.  I still have a rather sizable hole or rather cavity in my lung.  I am only a week off antibiotics and already coughing blood again.  I notice my oxygen saturation drops significantly at night, and sometimes during the day with any type of walking or activity.  I have a higher heart rate then normal- assuming because my body is working harder to get the oxygen it needs.   My diabetes is alright.  By standards, it isn't good- but it is controlled.  My liver is still scared(liver cirrhosis) and will eventually stop working.  Not exactly the picture of perfect health by any means- but also not exactly at the transplant stage either.



I have spent the past couple months freaking out about deciding what to do with the rest of my life and how to handle it. Why?  I caused myself sleeping problems, anxiety, panic attacks, nightmares, you name it.  All because I was told I  "need to start thinking and looking into transplant".  I respect my doctors and their opinions and I know they know better then me- that is their profession.  They spent their lives studying this disease and trying to learn the ins and outs of it but in all respect, I don't care right now.  I need to live my life.  I need to live without fear, without anxiety, and without the "threat" of transplant.  I know it is life saving, and life changing.  I am not there yet.  My diseased, hurting, scarred lungs are still putting up a fight- I need to listen to them and fight with, not against.

I am listening to my body now.  Right now, it says fight.  Yes, it may get difficult or challenging at times but I want to win.   I fight, I always have.  In grade school I fought the teachers on little technicalities. (Brigid and Bea can attest to that)  I argued with them because I could.  I had something in me that wanted the world to know I will not take a back seat in life.  I am a fighter.  This past hospital stay I fought again.  Not only for my health but for legal rights that were violated.  I fought because I could.  Again, I did not like the feeling of sitting in the back seat and having no control.  So I fought, and I won. That spark is back.  That feeling of winning is there, my new form of determination.  As I went into the hospital this past admission I wrote, " I may have lost this battle, but certainly still fighting the war."  Well, guess what?  The fight, has just begun!



Thanks Lisi for sharing with me a great song- it is the perfect song for not only CFers but everyone.
"I, I did it all I, I did it all 
I owned every second that this world could give
I saw so many places the things that I did
With of every broken bone, I swear I lived"

"Grass is Always Greener on the Other Side"

It seems like Thanksgiving was months ago, not weeks.  Maybe time is going by slower for me because being unemployed is starting to get to me.

Granted everyone hates "the Mondays" but when you don't get to experience them anymore its almost worse.  Yes, even when I was working "the Mondays" would hit me occasionally but most of the time, if I wasn't sick, I enjoyed waking up, getting dressed for work and heading out the door.  I think back to working last year and even in the dead of winter (which was brutal last year) I loved that feeling of going to work.  Call me crazy, but maybe I knew working would only last so long.  Also, growing up my dad always said, "Do something you enjoy and then you will feel like you never worked a day in your life."  Most people know those who are involved in working at a non-profit, work for the love of it, not for the paycheck.  For me it was certainly that.  Although there were some days were I said I don't want to do this the rest of my life (prospect research), I'd rather be involved with talking to donors more- it was all a stepping stone.   I tried for 9 months to "be normal" and work.  I could only handle part-time, and even then it was too much sometimes.  CF got the best of me 4 or 5 times during those 9 months and unfortunately put me out of work for upwards of a month one time.  Most of the time, a week or two.  I was very lucky to work for such an incredible company, and bosses who understood CF and allowed me the time I needed for a proper recovery.  Obviously in the end it didn't work out, or I'd like to think I would still be there, but I was very fortunate for the experience.   While I was working, I liked to do my best.  Of course there were times I wasn't feeling good and just went through my work until it was over and I could go home and snuggle in bed, but the days I felt good, I tried.  I loved dressing up- wearing dresses/skirts, heels, jewelry, make-up the whole nine yards.

Ideally, I would like to find another part-time job but I know it is probably best that I focus on my health.  Doing the Vest, and nebulizers 2-3 times a day adds up.  I know if I worked I would cut them out and essentially let my health go.  Sleep is hard to come by as well, causing me to either nap at weird times during the day or not at all.  I will sleep for a few hours at night if I'm lucky, but ultimately wake up coughing or gasping for air.  The blood continues as well, although its been manageable not more then a few ounces or tablespoons.  Although it usually comes with pain.  Sometimes are better then others.  There have been nights where I lie in bed where every breath in or out hurts.  I try not to move and just hope I will be able to fall asleep and forget about the pain but sometimes the sharpness is too much.  There is nothing to do about that other then just hope it goes away.  If I feel up for it, I drag my tired body out of bed and into the living room to do another round of the Vest.  The pressure of it, squeezing your ribs, is almost soothing.  It also helps if I am having a coughing fit.  I don't think the Vest itself does much, but sitting up and not laying helps.

Without sleep my body quickly drains and I have pushed it to the limit many times.  I tried a full time job, well really it was part-time but I worked 43 hours that week and then around 38 the following.  Of course, by the third week I was in the hospital.  I was asked to help out and work more hours and of course I said yes.  It was a good experience for me because I had convinced myself I would be able to handle full-time.  43 hours is typical for a full-time job, and for me I was exhausted.  I was so happy to see what it was like and "complain" to friends about how I was on my 3rd cup of coffee because I was tired but it wasn't even that kinda tired, my body was literally aching.  I loved taking the el though and being surrounded with people my age going downtown for work.  I loved that feeling of coming home at the end of the day and feeling accomplished.

People would love to be able to stay home and not work but its nothing to brag about.  I feel like a debt to society.  Luckily, I still look young so people assume I am in school still as I walk around Jewel mid-day grocery shopping, or read a book at Barnes and Noble.  I think I would feel more self-conscious if I looked older and did nothing with my day.  I know I shouldn't care what other people think, but I do.  I worry that because I don't have a job, or am in school I just fail society.   Growing up when anyone asked what I wanted to be, I fiercely proclaimed a lawyer or judge.   I never pictured unemployed in that dream.  I still dream of being a lawyer or judge, but its more of a wish then reality.  Yes, I graduated college with honors but it took 5 years, 2 schools, and countless hospital stays.  Most of my courses, toward the end, were primary lecture but assessments were on papers related to the topics.  I was able to do the readings on my own and able to catch up when it was more convenient for me.   I know law school is also primary lecture, however your assessments are what was given in class.  I am sure reading the material on your own would help but it would be really hard to pass while not actually attending class.

Which brings me back to transplant talk.  Obviously it has been on my mind all month long.  I've thought more about it, and researched more.  I am slowly, and I mean slowly opening up to the idea of it.  The complications and risks still exist and worry me but the gift it gives is worth it- life.   It is still not known if I make a good candidate for transplant and if a center will list me but it is a conversation I am willing to have.

Transplant Talk

We celebrated my birthday in the hospital last Thursday.  We had pizza and angel food cake with strawberries.  It was a nice birthday.

And throughout the week my friends have been coming to visit me.  It is really nice to have them come by and just catch up on things/ gossip about who is cute in the hospital.  Like tell them how the night before, I had the cutest respiratory therapist only for him to show up half hour later and as I thought he left the room I blurted out "see isn't he cute" and turn around and notice him fumbling with closing the door- meaning he most likely heard me!!

Chicago is a city of almost 3 million people.  But it really is a small world.  The first few days in here I posted on Facebook, Hotel Northwestern for the week.  One of my friends from Loyola, who I haven't seen in a few years messaged me she was working that night and would stop by with Starbucks.  I didn't know she was working here, but it was great to see her and catch up.
The next day I was have physical therapy and we were walking the halls and I ran into one of my parents friends.  She belongs to IC as well, but her sons were a little bit older then Jack and I.  She was here visiting her mother who fell and broke her hip.
A couple days later I was walking in my hallway with Dad, and I did a double-take at one of the nurses.  After a minute I realized I went to Loyola with her.  She was a year younger then me, but we had a class together jr year.
It is just funny how small this world is and how fun it is running into old friends and catching up with them.

For my birthday Kelly Jackson gave me a book called "The Tao of Pooh".  It is a philosophy book as told by the perspective of Winnie the Pooh.  In case you didn't know, I am obsessed with Winnie the Pooh.   This book is just interesting to learn more about Chinese philosophy and how they think but "dumbed" down to make it easy to understand.  Plus, they talk as if they are talking to Pooh and he responds in the same way he does on tv/movies- in which it just makes me laugh.

One of the quotes I pulled out of the book is the perfect outlook on life that I need now.  "A thousand mile journey starts with one step".

My parents and I had a meeting with both Dr. Michelle Prickett and Dr. Manu Jain (pulmonary) and their nurse coordinator Joanne and social worker Lori.  We discussed my health and where it is headed.  Currently, I have a cavity in my left lung that is getting bigger and causing pain as well as being the possible source of my bleeding.  I bleed often and that is contributing to my infections as well lung damage.  At this rate, the doctors believe my health will continue to decline.  Right now, at 42% lung function,  I am still reacting positively to antibiotics but they are saying it will get to the point where antibiotics won't work anymore.  As of now there are only a few that my cultures and "bugs" inside my lungs respond to.  They have exhausted others that used to work.  Before we get to the point where nothing works anymore they want me to be prepared.  This includes the conversation of transplant.

Transplant isn't an automatic solution.  Essentially you are trading one disease for another.   After transplant you run the risk of rejection and eventually organ failure from that.  In order to prevent that, you take anti-rejection medicine that compromises your immune system.  This makes it very risky to be in public or crowded areas as they are "germ pits".  Also, the other complications of CF won't go away with transplant.  I will still have liver disease, diabetes, low white blood cells and platelets and seizure disorder.
The benefits of transplant are obvious though.  I will be able to breathe!  I won't be coughing blood.  I won't need oxygen(thankfully it is only at night at this point).  It will also extend my life.  There are people with transplant going on ten years and maybe even more!   I will be able to work full time. There are so many things that it can do.

It should be obvious what choice I make.  As this "fork in the road" is presented to me, transplant or comfort care, I wish it was easier to choose.  Maybe it will come a little later when I learn more about both options.
As for now, we are holding off on everything and just focusing on getting me better from this infection.  I have been on IV's over a week now and starting to feel better.  I am still coughing blood, but it isn't as much anymore.  I also went 3 days without any blood!  We will revisit this topic together as a team in 4-6 weeks.  At that point, I assume if I decide transplant we will begin the process for evaluation.  Evaluation is like a week long of tests, literally every test in the world that has to do with any of your organs and general health, is conducted.  They will determine if you are a good candidate for the surgery or not.  Alot will also fall on my team of doctors now, as they also have input as to how they think the surgery will affect me.   A concern, and possible disqualification for transplant for me is my liver disease.  As that progresses, there is nothing they can do for it.  So the question falls on the liver team whether they think I will be able to handle the surgery from a medical standpoint, including all the drugs they will give me.

Mentally, I am handling this conversation of transplant much better then the last (initial reality).  I will be seeing a therapist to talk things through and see if she can help me make the right decision.  As the CF team says they support my decision, and what I think is best for me.

I guess more to come in the following weeks.

Hotel Northwestern

Hotel Northwestern:
Well, it was only a matter of time before I ended up back in the hospital.  I only wish I would have lasted a little longer until after my birthday.  
Lets back it up:  First, I didn't feel too good on Halloween but its Halloween- so how am I not going to go out?  Also, Winnie the Pooh is one of the better costumes I've put together so it had to be seen.

Winnie the Pooh and Zoombie Piglet.

I decided to go out on Halloween, but CF caught up with me at the end of the night.  I was coughing up blood then and really short of breathe.  Saturday and Sunday, I took it easy.  Monday, CF was back at it and taking over my life.  I don't think I have slept for more then 2 hours at a time, without waking up coughing or hacking up a lung.  Monday night/Tuesday morning it got worse and has severe lung pain with it then I decided it was time to go in.  So at 2:30 AM I hop in a cab to the ER.  Love city living!!

Thank god for my CF team.  Nurse Joanne has been the glue holding this program together and she and Dr. Michelle Prickett welcomed me back with open arms.  I am so grateful to them.  There are alot of questions as to what is going on with my health, and why I am coughing so much blood all the time.  We are going to do many tests to rule out other conditions as well as see if they will shed light on what is happening.  In the mean time, they believe it is in my best interest to meet a transplant team and begin to start feeling comfortable with them and slowly progress into evaluation.   Again, this is a hard pill to swallow but it is sitting with me better then last time I heard this news.


This blog has yet to have real direction- I almost use it as a diary to keep track of my thoughts and what happens in life.  The other thought behind it, is its an easy way to keep family and friends updated.  As of now, there isn't much that needs updating but I know my aunts and uncles always love knowing what I am up to.

Well until next time, hopefully I will have some more answers about what is going on in my body and why I have been getting so sick.
In the mean time, I am going to enjoy my 25th birthday in the hospital and will make the best of it.  I have the corner room, which is bigger, so karma was good to me and maybe I'll host the best hospital birthday bash yet.  If not, I have a wonderful view of the lake and watching the sunrise over it is absolutely beautiful.

Happy Halloween

While it is Halloween today, it feels like it should be Christmas.  It is doing that weird Chicago thing, you know snow/rain coming down sideways and ice pellets hitting you in the face as you walk down the street.  How lovely?

Last night I finished my last IV and then deaccessed myself.  Taking out the needle in my chest from the port-a-cath was the greatest feeling.  The port is the best thing I have decided to get because it makes having to do IV's so much easier but having a needle in your chest for 2 weeks at a time can get irritating.  The tagaderm, or special tape to cover the needle and keep it clean gets itchy too.  Anyway, I am needle free!!! (Until next time)
The IV's helped a little but not as much as they used to.  I was still coughing blood last night and had chest pain.  Something I guess I just have to get used to.  Most people keep a bottle of water at their bedside at night, I have a bottle of water and an empty bottle that I cough my blood into.  Hah really attractive right?
As I am starting to come around to the idea of a transplant I can't quite grasp it.  I cry.  For one thing, the emotional rollarcoaster of being on the transplant list is daunting to me.  Then the actual transplant scares the bejesus out of me.  The thought of my family watching me lifeless on a bed as a vent breathes for me makes me cry even more.  I watched my dad on a vent after his second open heart surgery and it looked so fake.  He looked like a dummy lying there, and every 30 seconds or so the vent would breathe for him and his chest would rise then go back down.  I couldn't handle watching that and I don't want my family to see me like that.  You are so lifeless and helpless at that point, hooked up to so many machines, IVs, tubes and who knows what else.  Also, selfishly I am so afraid of waking up on the vent and gaging on the tube.  I am also so scared to have chest tubes.  They are HUGE!  Then there is the surgery itself, there are so many things that can go wrong.  It is so overwhelming.  I know it should be a simple answer, do you want a transplant to extend your life and live longer?  But there is so much that worries me, that the answer is not as clear cut as it should be.
If I make it through and everything is successful then the following years there will be fear of rejection.  If my body rejects the new lungs, again I will be faced with the decision to go on the list again and have another transplant to save my life or just accept the fact that this is it.

Switching gears here:  In honor of Halloween, I am dressing up as my favorite- Winnie the Pooh!!  I am so excited!!
I have yet to try on my costume but I am positive it will be amazing.
The little things like dressing up for Halloween and meeting friends for dinner make me appreciate being out of the hospital and my health as it is.  I am fortunate enough to be able to still do these things.

Happy Halloween!! Looking forward to lots of candy and dressing up!