Welcome...

Hi all - Welcome to my page - Hopefully you will get as much out of reading these as I got from writing them

About Me

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Easton, PA, United States
35 year old, CF - Received double lung transplant on March 6, 2013!

Sunday, August 7, 2011

6 weeks down...

So it's been roughly 6 weeks since I have been listed, in the same breath I can't believe that is has already been 6 weeks and I can't believe that it has only been 6 weeks.  I guess this is the way I am supposed to feel, right? 

The last 6 weeks have been pretty uneventful in the grand scheme of things, the oxygen man came out last week to make sure my O2 machine is in good shape and the home nurse comes every 4 weeks to flush my port.

I had my CF clinic appointment about 3 weeks ago and things are status quo, my lung function is the same but my sinuses seem to be getting worse, I was told to try and find a sinus (ENT) doctor in my area, I am hoping that I get my transplant call before I feel the absolute need to do this and that the transplant will magically make my sinus problems go away.  Wishful thinking on my part probably but stubborness is a part of who I am, I feel like I have control of nearly nothing now so the need to try and regain some of that is strong. 

My previous employer's fundraiser that they did for me raised nearly $14K which is absolutely amazing, I got to see a lot of people a couple of weeks ago for the annual sales conference.  It was a glimpse of a former life which I seriously took for granted, also a very nice reprise of my current life, not so much my life actually just my lifestyle. 

Last night was another benefit at a local bar and it was a great turnout and a good time was had by all, thanks so much to Tabitha for getting me involved with the Banding Together foundation. 

I am sad today as Tabitha and Jeff left this morning for a very good friend of mine's wedding.  She is getting married on a cruise and I so wish that I could be there for the wedding and the cruise, I have to remember that taking care of myself and waiting on the list is my number 1 priority, although it is what I need to do right now I find it more and more difficult everyday.  I want the focus to be off of me and I want a normal life.  I guess these are things that most people with CF struggle with everyday, when I was more healthy and was working it was easier to deal with, now I feel like most things revolve around me.  Don't get me wrong I am eternally grateful for everyone and everything that people are doing to help me, I just want to give back and shift the focus, I want my transplant call to come and life to go back to the way it used to be. 

Well enough of feeling sorry for myself and wanting change that is not going to come, today I am going to do normal things like straighten up around the house and go food shopping.  I am having my niece and nephew over in a couple of days and keeping them until Saturday which I am so looking foward to.  I am going to play with my dogs and do my treatments and fill out my fund transfer forms from my fundraisinig to pay a couple of medical bills.  The more I do the more I realize that I need to learn to integrate parts of my old life and new life together and to accept that change of any kind is stressful and difficult and what I am feeling and going through is normal and so am I.  And that I have the best family and friends in the entire world.  And that I am going to be okay, I am strong and I am a fighter and it is okay to take a break from both of those roles once in a while as long as I don't linger in that break. 

I have CF but it doesn't have me...

Tommy - You are the best husband in the world and I love you more than I could possibly express...

Love to all,
Bet

Friday, June 24, 2011

And the countdown begins

Hello all fellow bloggers and followers!

I have quite good news to report on all fronts, I got a call from my transplant coordinator this past Tuesday morning and I am now officially on the list!  My LAS (lung allocation score) is a 32 which puts me right about in the center of the list which is a good place to start, they obviously are not able to give me a time estimate but I like to hope that I will get my transplant around my birthday/Christmas.  All I want for Christmas is my 2 new lungs, lol. 

I also got my APPROVAL letter from social security disability this past week as well, I will begin getting monthly SSD checks in November, I am so happy and grateful, I still feel as if all of this is surreal and I am reading or living vicariously through someone else.  Nope this is me and this is the real thing, the proverbial ride of my life is beginning! 

So I have now been out of work for close to 2 months, the first week was horrendous, I felt so lost and out of place and did not feel like a productive part of society.  I have been able to work through (most) of those feelings and I am now in a much better place, I try and do little things each day to keep myself busy. 

The fundraiser through SHI is now complete (yay!!) and I should be hearing from HR within the next couple of weeks when they can present me with the final amount and check.  My BF Tabitha also knows someone who does fundraising work and she is supposed to have 3 events in the next couple of months and all of the proceeds for those events will be split between myself and another family in need.  Seems like nearly everything is on track for the first time in a long time! 

I had a visit from my Aunt and Uncle from Kentucky earlier this week, I haven't seen them in close to 8 years.  We had a wonderful visit and they brought me a box of things that belonged to my Dad, I went through them and though it was emotional at times it was worth it, I think I worked through some of my feelings and have a bit more closure than I used to.  For those of you who do now know my Dad committed suicide on July 25, 1991, nearly 20 years ago and I still have a hard time dealing with it.  Seems like all of the transplant stuff that has been going on has really opened me up emotionally and brought back a lot of old feelings that I thought I had already dealt with - well guess what, that is not the case!  It is a very positive thing though as I feel like I actually acknowledge and understand my feelings.  I just wish that I could turn off these damn tears for at least a week, I need a break from this crazy ass ride - I guess the song rings true, you can't always get what you want, but if you try sometimes you just might find you get what you need. 

I have 2 doctor appts coming up soon, Dr. S on July 5th and then my UPenn appt on July 26th.  My yearly family reunion is on July 23rd and we are going, I am excited to see family members that I haven't seen in quite some time, I think the last family reunion I was at was at least 10 years ago.  It is being held at my Aunt and Uncle's house in Maryland and the theme is Hillbilly Heaven 2011, should be a blast, I have my overalls, cowgirl boots and hat ready to go :) 

So that's the story for now, wanted to write more but I am exhausted!! 

Love and peace to all!
Bet

Wednesday, April 27, 2011

Happy thoughts...

My last day of work is in 2 days, wow.  Although I have been planning this for a while I guess I never really thought it would happen - seems to be an ongoing theme in my life.  I have my exit interview on Friday and my benefits review and the lawyer that I've been in contact with through the CF foundation will be filing my SSD paperwork soon.  I decided to go into the actual office on Friday for my exit interview, whether it's for better or worse there are things that I need to say and get off of my chest (besides literally my lungs) and  I do want to see people.  It looks like the fundraising is 95% approved so hopefully all of that will be a go as I have to start paying for COBRA soon and will have no income until the SSD kicks in.  So the big news is I had my UPenn appointment yesterday, it seems that they all agree that I have done everything that I needed to do and all is in order, I just need to provide them with proof of my COBRA insurance which I should have within the next couple of weeks.  Once this is in order I can be listed, the doc said that once listed I won't have to wait more than 12 months.  Even as I type this I can't believe it.  All of the frustrations and tears and determination and endless phone calls (which I hate to make due to my stutter) are paying off.  I know that things can still go wrong, never think for a minute that you are 'home free' but it is amazing to know that the process may actually be starting soon.  There are still so many thoughts running through my mind, what happens if I get worse and die waiting, what happens if I go through the surgery and it is not successful and even more that are far too morbid for me to even admit to myself that they exist.  But without the negative there would be no positive and this is what I need to focus on.  So for today, for this hour, for this minute things are good and my thoughts are happy.  

I sent an e-mail out to about 100 or so employees of my company, people that I have met through the years and who have been a part of my life explaining my situation, the responses that I received were beautiful, so many people sending positive thoughts and wishes, even several personal stories about others who have known transplant recipients.  I will save these e-mails and cherish them always. 

So I guess the bottom line is it's okay to have sad thoughts and it's okay to have bad days when you just want to throw in the towel, without these things we wouldn't have any sense of being grateful for what we do have or what we are given.  Even the possibility that I may be given the gift of new lungs and a new chance at life is surreal; people are rooting for you and pulling for you even when you can't do it yourself.  

Hopefully I will have more time to blog soon :)

Thanks for reading and caring and sending positive thoughts and prayers, they comfort me and bring me back to a better place when I need them most. 

Monday, March 7, 2011

Moving Right Along...

So it's been 1 month exactly since my last blog and man oh man what a month! 

I managed to sort out the financial issues that I was having, as you remember from my last blog having no STD or LTD (short/long term disability - NOT sexually transmitted disease) was making it difficult for me to be added to the UNOS list.  After a combination of following suggestions and doing a boatload of research everything now seems to be in order.  I am officially resigning from my job, my last day is going to be April 29th, this brings both good and bad feelings, I am glad because I really have been feeling too sick to work and I need to relax and focus on my health, bad because I have been with my employer for nearly 11 years.  I started when I was a mere 22 year old, that sounds like light years ago, pretty much almost my entire adult life has been spent here.  I have made the world's greatest friends (you all know who I am talking about), have found 2 husbands (one straight and one gay who wears really tight pants I might add) and have went through so much growth and change but like everything else the chapter has to eventually end.  So with Whitney Houston's I Will Always Love You lightly playing in the background (bittersweet memories, that is all I'm taking with  me-eeee-eeeeee-eeeeee) I try and look forward without looking back too much and will have my final good-bye to said company in 8 weeks.

As I will no longer be employed this lets me apply for SSD (social security disability), one of the WONDERFULLY helpful people that I have met on this road has told me that with my health status and lung functions that it should take anywhere from 2-5 months for me to be approved, once approved I will have monthly income and therefore (drum roll please) can be added to the UNOS list - victory victory let's repeat it!!  I am expecting a nice fat commission check in April and this will get us through financially until the SSD kicks in, then life goes on as we know it and I wait, it will be nice to just sit back and wait when the time comes, have friends over, chill out and catch up on TV shows and movies and write my BOOK, there has even been mention of a retirement party which would be awesome to have at 33 years of age.  Just in time for spring as well, SWEET!!!  I am looking forward to spending a lot more time with my brother, sister, 6 month old (as of today) nephew, and other family and friends that have got me through one of the most difficult times in my life.  The rage and anger that I once felt turned into persistence which has now become gratitude.  Although having CF is not the best thing that can happen to a person I would not change it for the world, I have learned so much through this journey called life, it has formed me into the person that I am today and she rocks :)

So onto part 2 - I hadn't been feeling well so a couple of weeks ago I called my CF doctor's office and told them, they said to come into the clinic the next day and pack a bag just in case.  I did and was admitted, there were ups and downs, I was going to go into detail about them but maybe I will save that for another day, the point seem to be moot (?) now.  Due to the crappy ass veins that I have and them being used for 33 years I got a portacath on this visit, it has been 1 week today since I got it and I am finally starting to feel better and have a lot less pain.  I was discharged from the hospital this past Thursday (I spent about 10 days there) and am now on home IV, my follow up with the brilliant Dr. S is on March 15th, I am so looking forward to it, I can't wait for the port needle to be taken out and then I can actually shower again and not take sponge baths as glamorous as they are. 

Well gotta run, the home nurse will be here within the hour to change my needle and my dressing, thanks to everyone for visiting and cheering me up while I was there and since I've been home.  You all rock my world in ways you will never know. 

Later dudes,
Bet

Monday, February 7, 2011

Ode to Matthew Wilder

Again I know, it's been a long time...

Honestly the last month or so has been a complete whirlwind - I don't think that even whirling dervishes are as physically dizzy as I am mentally.  Life has been a roller coaster - the highs are very high and the lows are very low, I've always loved roller coasters but living life like you are constantly riding one is a bit insane.  There have been times in the past couple of weeks that I cried for hours, and when I say cry, I mean it in the biggest sense of the word.  Sobbing uncontrollably, there were not enough tissues to keep up with the tears, I talked to my deceased grandmother and my deceased father, asking each if I was making the right choices, if I was doing the right things, asking them to give me strength that I did not think I possessed.  I prayed HARD to God, not only asking for help but also screaming out in rage for putting me through so much.  I did not know if these helpless feelings would stop, I do not remember ever feeling like this and I have been through a lot in my 33 years of life, I thought that I was prepared for anything.  Well, guess what?  Turns out that I was wrong.  Eventually the tears stopped and determination took over, damnit I am a fighter, always have been and always will be.  So here I am, semi-prepared and getting ready for the fight of my life, literally.  I have a new sense of passion and I somehow just 'know' that everything will be okay.  They say stuff like this builds character, well if that is the case then I am or will soon be chock full of it! 

So here is the jist of what has been going on - the last time I blogged I was preparing for my 3 days of evaluation testing.  The testing went well for the most part, there were parts that got completely screwed up but those of you who have CF or any chronic illness know that this is just a part of the medical system.  You can't be a chronic patient without expecting there to be delays, problems, etc.  The 3 days were pretty much as I had expected, appointment times got changed without anyone notifying me, I would report for a certain test and the desk clerk would tell me that they have no record of my having an appointment, blah blah blah - the list goes on.  The important part is that all of the actual tests (once they were done) went well.  My biggest complaint is that one of the fasting tests took wayyyyyyy too long - if you know me you know that I don't deal well with hunger, I’m like one of those 'divas' in the Snickers commercials.  At one point I exited the 'testing' area and burst into the waiting room wearing socks and a hospital gown.  I saw my husband Tommy and my mom sitting there, staring at me, amongst others who were waiting for their loved ones or their appointments.  I started yelling loudly and ranting and raving that I was hungry, in words that are not so nice and I have deemed censored.  I want to express my impatience but I don't want you guys to think that I am a bitch, even though sometimes I gladly am :)

So fast forward 2 weeks later, I had my follow up appointment to review my eval results on January 24th, I was so nervous I thought I might shit myself.  Along with me was Tommy, my mom and my best friend Tabitha, I wanted/needed as many support people with me, this appointment could go either way.  I get called in and the nurse began to take my vitals, I was so nervous that my pulse ox was 85, for me normal at rest is about 93.  She told me to breathe in deep through my nose and out through my mouth calmly, after a couple of minutes it rose to where it normally is.  We were then ushered into a room to wait for the transplant coordinator and doctor to come in, we made small talk and joked even though no one felt like doing either.  Having people who support you no matter what is priceless, without them I do not know where I would be today.  The transplant nurse comes in and goes through my testing results with us, all of my organs (aside from lungs obviously) are working normal which is vital.  My FEV1 on the day of the PFT (pulmonary function testing) was 30%, which for me is good, it usually falls somewhere around 25%.  FEV1 is the amount of air that you can blow out of your lungs in 1 second - for normal people my age the average is around 90%.  Most people who are listed for lung transplant have an FEV1 of 25% or lower.  I also found out that both of my lungs function at basically the same level, 1 is functioning at 49% and the other is functioning at 51%, this is good news the coordinator explained, some people have 1 lung that is doing very well and 1 lung that is doing very bad which warrants a much quicker need for transplant - so basically I have time - yay!  They currently only have about 30 people on their waiting list for double lung transplant - wow - I was expecting the waiting list to be at least 200 - what good luck I was having!!! 

OK so here comes the kicker and the point of all of my stress since then - I was told by my HR department that since I live and work in PA (since I now work from home due to my illness and have been since January 2010) that I am no longer eligible for NJ state short term disability.  OK, I say so what about through the state of PA, surely I must be taxed for this out of my paychecks since I live in PA and have since 2005 with the exception of my stint in the UK.  Well to make an extremely long story short I was told that PA has no such state program and none is offered through my company - they do however work with a third party LTD company (long term disability) that I can apply for.  I take their advice and apply and low and behold 7 days letter I get a rejection letter from them - I am not eligible for coverage through them because of my CF.  My HR department has been beyond UNHELPFUL, the only thing that I know for sure is that I have no STD or LTD.  One would have thought that perhaps they would have told me this back in January 2010 when I informed them that I was moving back home to PA, especially since I have used STD at least once/year since my employment with them began back in 2000, not trying to throw blame here but I was COMPLETELY blindsided.  I went through all of this with the finance coordinator and the social worker at UPenn and due to the fact that I have no STD or LTD they are not able to add me to the UNOS list.  They cannot transplant me and then risk me not being able to afford the post transplant drugs due to lack of income.  I am now also forced to continue working even though there are days that I can barely get out of bed, my boss and co-workers are as understanding as possible but I know that I am putting a burden on them and it is not fair - but such is life, right? 

So here I am, sick and sick enough to qualify for a double lung transplant but I cannot be added to the list due to my disability status.  I contacted the CF legal hotline and the woman that I spoke with sounded as baffled and confused as I am, she said that the woman who runs the hotline is a lawyer who actually has CF!  What a solid advocate!  She was going to relay my situation to Beth and have her call  me back.  So at this point that is what I am waiting on. 

I asked my oh so helpful HR department about a week ago if my NJ STD status would change if I were to move back to NJ, the HR director basically told me that he did not know and I should follow up myself, he also provided me with the link to the NJ Department of Labor website, what a gem, right?  I navigated through the site as best I could and I think I found an answer - I think that I have to live in NJ (pay into NJ SUI/SDI) for 5 consecutive months before I can be eligible to collect STD.  So worst case scenario (at this point) is that I move back to NJ and live with possibly my grandfather.  I would miss my husband, my mom and my dogs beyond belief but if this is the only way for me to get the transplant that will save my life then so be it.  I am hoping that the CF lawyer will be able to advise me otherwise, I may even have to hire a disability lawyer, honestly I do not know what is going to happen from here - if anyone has any advice PLEASE let me know!!!!  In the meantime I am going to focus on starting fundraising etc and try and keep a positive attitude :) 

Whatever the outcome I am not going to go down without a fight, I'll go down guns blazing if need be.  I feel like Erin Brockovich Part 2, ha ha. 

So this all being said now I am done feeling sorry for myself and I am ready for battle, like Matthew Wilder said (hence the title of this blog) Ain't Nothing Gonna Break A My Stride - my theme song for the rest of my life!!!

Peace to everyone and a sincere thank you to all of my friends and family who have put up with me despite my mood swings, coughing fits and general bitchiness.  I promise you all it's going to be a crazy ride but well worth it.

Love to all,
Bets

Wednesday, December 22, 2010

Better late than never...

OK so I know the point of blogging is to keep people updated on what is going on in your life - it is somewhat impossible to be kept updated when said blogger writes one post and leaves it at that - so I say I am very sorry.  I kept meaning to update but life and stuff (not the blog title) gets in the way.  My last post was November 8th, it was about one week after my initial transplant consultation and I think I was feeling slightly overwhelmed, not to say that that overwhelming feeling has passed but I think I am finally ready to get back into my blog and stay focused. 

We had to be in Phily at 9AM and with the horrendous morning traffic it took us close to 2 hours.  The ride there was fairly simple and straight forward and finding the hospital was pretty easy too.  So far so good.  My husband Tommy and my mom Debbie (Zebra) were with me, they tell you to bring people with you to these types of things and people who will be supportive throughout the process, the people that I live with were obviously the first two and only two that I wanted to bring.  So away we went, and let the fun begin!  I met with the transplant coordinator James - we went through my history and had somewhat of an interview - he was cool and relaxed and he is going to be on my 'team' throughout everything.  He told us some transplant statistics and gave us a basic overview of the pre-transplant process, he said that going into the actual transplant process and post transplant process would be a waste since there is such an abundance of information.  This took about an hour and once this was over I asked to use the restroom, he said that almost all candidates at this stage of the interview need to use the bathroom, so far I am status quo!  When my potty break was over I got to meet with the big dog, the surgeon who would be doing my surgery if I was deemed an acceptable candidate.  I have met many a doctor in my day as I'm sure those of you who have CF know all too well, there are some gems in the bunch but I have found that a lot of them are not empathetic and have a bedside manner that leaves a lot to be desired.  This surgeon was nothing like that, he was warm and compassionate and FUNNY, made me feel completely at ease and I immediately knew that I would have no problem having this man hold my life in his hands. 

We reviewed the records that Dr. S had sent over, over the past year of so my FEV1 has not gone over 30%, the average FEV1 of a transplant candidate is around 25%.  They said that based on my FEV1 and that my need for hospitalization and/or home IV in the past year has increased that I would most likely be a good candidate for the surgery, we decided that evaluation testing would be the next step. 

On a side note I learned many many things during this visit, the several things that have really stuck with me are that CF patients generally do well post transplant - mainly because CF patients are younger and usually do not have any other serious health afflictions.  They did say that of the transplant surgeries lung is the most serious and the has the highest risk of infection, etc.  This is because for all other organ transplants the organs are protected and not exposed to the room air, in lung transplants the lungs are exposed during the entire operation because of their placement in the body and size, lung transplant surgery generally takes at least 8 hours. 

The ride home was interesting to say the least, Tommy went to sleep in the backseat and my Zebra and me were left to navigate our way out of the parking deck and to the highway to get home.  This would of course be only 3 days after my GPS car adapter broke, between me and my mom and directions were are like the blind leading the blind.  We were doing okay until we realized that we had gone the wrong way and needed to turn around, trouble is in Phily there are 1 way streets everywhere so we could NOT figure out how to do this.  After about 30 minutes or us being 'lost' Tommy woke up and directed us how to get out of there, somehow it took him 5 minutes!  I will never understand how people have such a brilliant sense of direction when I have none. 

I went home with a little booklet that explains the evaluation testing, everything seems pretty standard to me with the exception of a cardiac catheterization, I have never had one of these and it does not seem like much fun but I guess I better get used to it.  You have to go through a lot of pain and suffering to get to the rainbow and since I was a young child that is where I wanted to be, Somewhere Over the Rainbow.  I will do anything to get there and have no intention to ever stop fighting. 

I got a call from UPenn about a week after my consultation, my evaluation testing is scheduled for January 4th, 5th and 6th, just about 2 weeks away from now!!  It's 2 days of 8 hour testing and then the third day is just the cardiac test but you have to lay flat for 6 hours after the test and have someone there to drive you home because of the mild sedation.  Tommy will be with me for all 3 days, not sure about Zebra yet, I am sure that she will come to at least 1 day of testing (right Mom?).

So I am excited and anxious and a whole bunch of other emotions, the anxiety has gotten the best of me and I am now taking a mild anti-depressant, it seems to help but not as much as I thought it would.  For a while I was ashamed that I even had to take anything, I feel that I have gone through so much in my young life (non CF related as well as CF related) and I have never had to depend on anything other than myself to get  me through but I have learned to accept this and that is the first step toward healing. 

I had my 33rd *gulp* birthday recently, luckily I was feeling good that weekend and we went into NYC and saw Elf on stage and went and saw the Christmas Tree, etc.  It was cold but a nice feeling to be out of house and with my hubby sharing this magical time of year and season.  Overall my health has been up and down, I have been missing a lot of work lately which worries me, I work from home so how much easier could it get?  I just find that I spend a lot of nights awake from coughing/vomiting and a whole bunch of other unpleasant symptoms that I am just too exhausted in the morning to get out of bed, I've been keeping up but it gets harder and harder as the time passes, I have so much value for the days when I get out of bed, go to the bathroom and let the dogs out.  I then stop and pause and realize that I haven't coughed yet, that is a wonder in itself, it always comes (the cough) but when it's not the first thing that happens when you open your eyes in the morning that in itself is a miracle and a blessing from God. 

With the love and support of my family and friends (and my wonderful friends overseas who mean more to me than they could imagine) anything is possible.  Every day that we get to spend with our loved ones is a gift, whether it is a good day or a bad day, just having someone there for you who offers their unwavering love is what makes life amazing...

Well Merry Christmas and Happy New Year to all - I will post again after my evaluation testing - wish me luck although I don't think with all the blessings in my life I really need it ;)

Monday, November 8, 2010

New Beginnings

OK so this is my first blog ever, here goes...

As you may or may not have read in my profile I am a 32 year old female with cystic fibrosis.  I am married to the best guy in the world although I don't tell him as much as I should.  My mom currently lives with us and our 3 dogs: Chewbacha, Lucy and Winter.  We are all one big happy family (most of the time), we live in Easton, PA. 

I decided to start a blog because I got inspired by another CF blogger that I randomly found one day.  After many years of denial the past couple of years have bitch slapped me pretty hard.  To sum it up my hubby and I moved to the UK in September of 2008 along with Chewy and Lucy (BTW bringing dogs into the UK is a hot nightmare), we relocated for my job where I have worked since May of 2000, it was a great promotion and one that I was looking forward to immensely.  Everything was going great until I began to feel sick and to make an extremely long story short I had to wait 4 months for an appointment with the CF clinic in London.  During the waiting period we flew back to the US for Easter, the entire time we were back I was so sick I could barely get out of bed but was stubborn and refused to be taken to the ER, I wanted to wait until we got back to the UK because my long awaited appointment was 3 days after we were scheduled to return.  About 3 days prior to our departure I broke down and let my hubby take me to the ER at Robert Wood Johnson in New Brunswick, NJ.  I was SICK - I ended up being admitted and was in inpatient for close to 4 weeks, I was on the normal CF IV antibiotics among other things.  This is when I met my current CF doctor who is AWESOME and one of the best doctors that I have ever worked with - I normally do not like my doctors and I fight and kick and scream every step of the way - this is my way of attempting to stay in control of my life.  So anyhoo after much debate hubby and I decided that we needed to move back to the US due to my health care needs so after a 7 month stint in the UK here I was again, back in the US with a major dose of reality in my face.

I was able to keep my job and work from home, it has worked out great on that front, the only thing that is a pain is that I have to keep European hours so technically I should start work around 5AM, yuck, silver lining though is that I am normally done by 1 or 2 PM, yay :)

The past 18 months have been interesting, from the getgo the great new doctor (Dr. S) has been talking to me about the option of a lung transplant, until very recently I have been giving the response of a BIG FAT NO!  Well time passes and sometimes we are forced to see the truth before we are actually ready to.  I have had to go on IV twice in the past 8 months or so, I remember the days when I was young and in school and IV would only be required once/year, it wasn't even a necessity either, it was for preventative reasons.  My how things change...

So here I am now - About 2 months ago I told Dr. S that I was ready to consider the transplant and in fact I would welcome it should I be a good candidate.  He wrote up a letter and sent that along with my medical records to the University of Pennsylvania Lung Transplant center in Philadelphia, he said I may hear from them soon or it could take a while - I was cool with a while - it was a huge step for me.  To my surprise I received a phone call about 3 weeks after the letter and records were submitted - they wanted to set up a consultation - we set it up for October 28th. 

Will write more next time - rewriting all of this is like reliving it as I am sure a lot of you know...

Thanks for reading :)