My lungs are assholes

I know it’s not their fault.  They have held up as well as they can after being put through too much when they were just little gals.  I’m not really mad at them.  It’s always been easier for me to dish out sarcasm and give people shit for fun, it’s what I do.  If you really know me, you know it’s all in fun and that underneath the jokes I’m really very sensitive and not at all that tough.  So I poke at myself as well, calling my lungs names in hopes they will be feisty back and show me they can continue on! 

That being said, I had my appointment at the University of WA last week.  They have a pulmonary hypertension specialty clinic and I saw Dr. Leary.  Let me just tell you how much I LOVED Dr. Leary!  He was amazing!  He took the time to study my records before seeing me!  He did not rush me and answered all my questions and had some recommendations/ideas of his own.  First, he feels that I may not have Pulmonary Arterial Hypertension.  He feels I may have Pulmonary Hypertension caused by my poor lungs, being chronically low on oxygen and potential sleep disordered breathing.  This is good news because PAH is a progressive disease without a cure.  Whereas, PH with another cause can be treated more easily.  Here is a link to the differences in the two:
Dr. Leary also was able to explain how my chronic low iron levels could play into this as well as the reasons I may be waking up with headaches every morning!  He wants me to have a sleep study within the next month or so and go back to see him in April.  He did  say that he would still recommend a lung transplant for me and that I should get on a list as soon as possible.   I cannot get my hopes up too much about transplant though.  UW already turned me down.  University of Utah and Standford have yet to get back to me.
My lungs will never recover and these assholes will need to be replaced!  The thought of a kicking them out frightens me!  However, I am willing to part with them if that means I will meet new friends who will be a breath of fresh air!  (hahaha…..get it…see what I did there?)  For now, I will hold out for some new 3D printed lungs!  Wouldn’t that be cool!
'I can't promise miracles, but the lung-enhancement surgery should cut, oh, I'd say two or three minutes off your time in the mile.'
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Just a lil update for now…

I’ve been off work for four days now….and things have been busy!  I had a work going away party and was surprised how many people came!  I was overwhelmed by the love and support!  Then my amazing sister in law and her girlfriend came into town, we had so much fun! Yesterday, I received a call from University of Utah lung transplant nurse.  Their team is reviewing me for a potential lung transplant.  If they feel I am a candidate, they will call me to see them in person.  UW turned me down for transplant.  They said I would be “too complicated”.  Who me?  Never!!  Anyhow, I guess they felt the radiation from my cancer treatments did too much harm not only to my lungs, but to the surrounded connective tissues.  But we will see what Utah says, I was also referred to Stanford but haven’t heard from them yet.

I also have an appointment at the UW Pulmonary Hypertension Clinic next Weds with Dr. Leary.  I advocated for this appointment for another opinion.  I am hoping that they will be able to review my case and lead me toward more aggressive treatment.  I just want to start feeling better.  I know this can be a slow process, but I am not used to staying so still all the time.  It is not like me to sit around all day.  I am going to go nucking futs soon!  I do feel the opsumit is starting to work though.  I am starting to feel like I have more energy and feel better in the morning.  I can go nearly all day before I feel like sleeping, so that is a step in the right direction!  I also feel my feistiness returning….so WATCH OUT!

 

 

 

Mondays suck but it’s my last one! BOOOOOM!

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I didn’t always know what I wanted to do when I grew up. I still don’t think I will grow up….yes, I know I am short, I am done growing though!  However, I did develop into an adult, even though I am not “mature”.  I laugh at dick and fart jokes, and what not.  However, I did manage to go to college and get a “REAL job”. I became a Social Worker but not because I wanted to change the world or anything like that.  I am not what most think, a bleeding heart social worker that will bend at whatever poor soul bats their eye lashes at me.  I learned that the hard way as an ER Social worker, getting duped by drug seekers who knew how to turn on the tears with their stories just to get meds.  Oh no, I am a hard ass, some even called me The Hammer!  I believe that people should indeed help themselves, while it was my job to assist them in finding the right resources that will enable them to do so. I became a Social Worker to give back all the energy, love and compassion that my family and I were given when I was a child with cancer.

The picture above  was taken in 2012. I’ve always wanted an official picture in front of the American flag like some kind of VIP!  Sometimes I look at it and pretend I’m the first woman president.  Most of my career as a Social Worker has been at the VA caring for our nations brave Veterans.  A career cut too short, nearly making my 10 year pin.  I would have been made ten years in April.  I worked at the VA as an Acute Care SW, helping to ensure veteran’s were safe discharging from the hospital.  Then I took on the job as the Caregiver Support Coordinator.  This week I sadly say goodbye to a job as the Cancer Care Navigation Social Worker.  I helped to build this new program that I hope will continue through out all our VA’s in the country.  It is a new approach to cancer care and helps our Veteran’s and their families navigate what is too often a very complicated system and helps to make sure they get they cancer care they need an eliminate barriers to their care. 

I never thought I would have to retire so early.  However, due to my health reasons I must now take care of myself and my family.  I am very sad to leave and in a state of emotional turmoil about it.  I will miss my patients, my coworkers, the friends I have made and most of all the challenges.  So on my last week of work, as I pack up my office, I will think about all that I have learned.  I will think back to all the lessons I have be taught and patients who have touched my heart.  I will thank my mentors, the wonderful supervisors (Cathy and Tom) and amazing friends I have made had along the way.  It’s been a great experience.  It is now time for me to put my focus toward new possibilities.