An Organ Donor Nazi?! Hmmmmmm....

Recently I was riding in a van with a group of people and one of them brought out their license for some reason and I asked if they had a heart on their license (the state of MI puts little red hearts on our licenses when we sign up to be a donor).  This person did have a heart and as he was showing me one of my friends declared, "Joyce is the organ donor nazi now."  I replied, "Yep, that's me" and didn't give it too much thought for the rest of the night.  However that comment has stuck with me, I'm not quite sure why except for the fact I don't want to be compared to a nazi and why make a comment like that?
The straightforward definition of Nazi does not fit :

n. pl. Na·zis

1. A member of the National Socialist German Workers' Party, founded in Germany in 1919 and brought to power in 1933 under Adolf Hitler.

2. often nazi An adherent or advocate of policies characteristic of Nazism; a fascist.

However, I dug deeper and found this in the definition :

3. (often l.c.) Sometimes Offensive. a person who is fanatically dedicated to or seeks to control a specified activity, practice, 

So, am I 'fanatically dedicated 'to promoting organ donation?  ABSOLUTELY!  Am I offensive about it? NEVER!

I chose to promote organ donation so I can help others and find positive in a predominantly negative life sentence of BO that has been dealt to me. I created my tshirts to promote this message. So many people have signed up because of my story and I don't state that to give myself a pat on the back I say that because when 1 person signs up to donate organs they have the potential to save 8 others.  Here's a random example, 20 people have signed up after hearing my story, the potential to save 160 people is now a reality!!!! That's mind blowing! If I'm not able to get new lungs then by golly I'm gonna make sure someone else does. 

So if that means I'm a "nazi" then so be it.  I will not stop educating others on the power of organ donation, I will not stop wearing my green bracelet, and I will never stop believing in the miracle that is organ donation. 

To sign up to an organ donor in the state of MI, visit www.giftoflifemichigan.org

or if you live outside of Michigan visit www.organdonor.gov or your local secretary of states website.

Pulmonary Rehab complete!

I graduated from pulmonary rehab last Thursday! WAHOOOO!
I can't say I will miss it, I always felt a little self conscious in there.  Like  everyone was wondering, "why is she here, what's wrong with her."  Now that may be my imagination but my suspicions became a reality when I was waiting for class to begin and 2 older ladies innocently asked why I was in rehab.  Well I must have needed to cry as the tears quickly came trying to explain I needed new lungs due to a rare disease.  Soon other class members were coming in and I could tell the ladies felt bad and immediately said they would be praying for me.


I don't mind telling my story but it still hurts knowing I'm not the same person I was and having to accept my new reality. This is my new lot in life. Keep moving forward, some days are easier than others.

When you put yourself out "there"...

"There" for me was creating this blog and going public.  It was definitely daunting and certainly exposing.  But I was determined to help someone with my story, determined to promote organ donation, and determined to stay upbeat.  Well the latter isn't always easy, I have my days of "Why me?" but for the most part I think I'm doing a pretty good job.

The upside of going "there" is meeting some very extraordinary people and sharing our journeys. I just met the daughter of Bill who needs a double lung transplant very badly.  He currently has 9% lung function and EVERY movement is a struggle.  He cannot be listed at Spectrum until he gains 5 lbs.  (There are very rigorous requirements that a patient must meet before transplant listing can occur).
I continue to be amazed on how the human body compensates and the spirit continues to withstand in adverse circumstances.
  Can you imagine becoming short of breath just by standing up from a seated position-- Bill experiences this.
Can you picture yourself becoming short of breath cutting watermelon-- Pete experiences this. http://peterdmosher.blogspot.com

Imagine walking around your high school and becoming winded -- Bryan experiences this.

What about walking and talking- no biggie, right? For me, it's nearly impossible.

The human body is amazing beyond comprehension but it is the human spirit that is the prize winning champion in the end.
So to my friends I've met through this blog and/or Facebook --KEEP FIGHTING, KEEP LIVING, AND MOST IMPORTANTLY KEEP BREATHING ONE BREATH at a time.

And let's all remember to go "there", and keep encouraging one another.


WHOOOOO-RAAAAAAHHHHH!! Go ahead yell it out loud- it feels good. Just go there....

A little setback...

I started feeling ill last Sunday, chills/fever/headache.  I awoke Monday AM with pink eye and feeling rather poorly.  I called into work (which I never do) and laid low. I continued with a low grade fever and since I'm on immunosuppresion my docs red flags go up.  I wasn't too concerned, just thought it was a nasty virus.  My PCP wanted to cover me so he prescribed a strong antibiotic, I'm not too keen on using antibiotics --- if it's a virus antibiotics don't kill viruses and if I get really sick I want antibiotics to cover any bacteria I'm fighting. Overuse of antibiotics can cause antibiotic resistance.
But alas, I'm a compliant patient and started my antibiotic.  I already a routine office call scheduled with my pulmonologist on Weds and would discuss my symptoms further with him.  My lung function testing dropped a bit- to 24% so when he came in he looked a bit concerned.  He said, "Either you're sick or we going to have a conversation about going back on the active transplant list."
I assured him I was sick but not really having respiratory issues.
We decided to do a chest X-ray, I was quite certain it would be negative and I wouldn't have to continue the antibiotic. To my dismay, the good Dr. Mcclelland called to tell me I had right lower lobe pneumonia ! Come on! I rested up and I finished my last antibiotic today and am feeling better.
You never know what is around the corner.

On another front, my son will be starting kindergarten next week!!! Talk about nerve wracking! Pray all goes well, I know he will be fine.  I'm the one who will be constantly worrying.

Pulmonary Rehab- what!

During my transplant eval, I had to see a respiratory therapist who specializes in helping those with lung disease exercise and how to breathe when you become short of breath.  Since I'm younger they felt my current regimen of Pilates was good and I didn't have to formally join a pulm rehab program.
Whew! I didn't want to join that program, not yet. I knew that the general population was older and I understood what was taught- I prescribe for patients.
Well, it's only a matter of time and a piece of humble pie will be served to you.
I think I flew under the radar a bit due to my age, the transplant doc in GR here prescribed the rehab a few wks ago.  I thought, really??  My wonderful pulmonologist told me to swallow my pride and do it.
Contrary to what many have heard about healthcare workers being the worst patients, I am a very good patient.  My thought is if I'm gonna preach it then I gotta do it.  I'm at the halfway point of pulmonary rehab.
For those who don't know, in this particular rehab you exercise on different equipment for an allotted time and then your oxygen and pulse are taken after each exercise.  There are trained staff there watching and helping if need be.  You then attend a class after your exercise on different topics- home exercise programs, medications, breathing techniques, etc.
Sounds harmless, right ? MY first class topic just happened to be on intimacy and breathing techniques.  WHAT?!? Needless to say, it was a bit uncomfortable sitting with 5 older gentleman (avg age 70) talking about this.
I gotta laugh - what else can you do? There was even a booklet passed out with, ummmm, illustrations. I will spare posting those.
I will be sharing this with Dr Mcclelland so he can never tell me to swallow my pride again! :)

It's fine, another hurdle I shall jump.  Those pesky stairs are my kryptonite!

"Fore Life" Golf Outing 2013

My friend Mehgan put together a wonderful day at The Pines Golf Course on July 21, 2013.
It was entitled "Fore Life", isn't that a fitting title?
It was beautiful weather and a lot of fun.
Lunch after was smoked and served by JR--he's our personal 'pit master'.

I continue to be amazed by everyone's generosity, love, and support of me and my family.
Here are some pics:

A BIG thank you to Mehgan-your first event was a great success! Thank you to all Mehgan's helpers!  Thank You JR for cooking, there were many raves about your lip smacking good food.

Thank you to all who came out to golf, volunteer, and to support the cause.

                                        LIVE LIFE, LOVE LIFE, GIVE LIFE!


                                                  Be an organ donor!!!!!!!!!!!!!!!!!

Is there a pause button?!?!?!?

So the last 2 yrs have taught me that life is uncertain, you are not guaranteed tomorrow, and I'm not in control.
I have frequent doctor appointments and monitoring. My last lung function testing showed an improvement---WHAT?!?!? It isn't much of an improvement--currently 28% -it was 22% earlier this year but when you have such crappy lungs it feels like I can run a marathon.  Of course I thought Jesus performed a miracle with all the prayers being said so I went out to a steep hill by our house and walked up it.  I was still short of breath, chest tightening occurred, and fast heart rate developed--this is normal happenings after someone has run miles and miles; this is what happens to me when I walk up a hill or more than 5 stairs.  Ok, no miracle yet but something else developed--HOPE.

Most of you do not know what it is like to be listed on a transplant list--it feels confining.  My family and I cannot freely go where we chose-I must be close to my chartered flight if Wisconsin calls so I can get across the big lake in time. There is a strict time limit.  Organs are not viable for hours and hours--there is a small window of opportunity for the transplant to occur.
Being listed also makes me feel anxious--when will the phone ring? Will everything and everyone be ready for their designated roles?

I decided to talk to my team of docs to see if I could take a time out from being on the transplant list. After all I was feeling a bit better, I still tire easily and have to limit myself.  All my docs were on board--I was told it is important to 'milk' your lungs as long as possible.  When my lung transplant occurs the clock starts--what clock? The clock countdown to lung rejection--this WILL happen to all recipients. One does not know if that is 2days, 2wks, 2 yrs, or 20yrs. (I think the record is 20yrs) Lungs have the highest failure rate-the nose is a direct vector for bacteria, viruses, allergens, and spores into the lungs.
A lung transplant is NOT A CURE, it just buys one time.
So please understand my trepidation, there is so much more which I have discussed in previous blogs.
Greg, I, and friends prayed about this decision.
There is a 'pause' button and I have activated it. Its more complicated than that but I'm still on the list but there is another part I am on. 
Is it risky? Sure, but a lung transplant and all that is involved is risky as well--very risky. I am fortunate enough to be very in tune with my body and I know when something is going wrong. I continue to be monitored closely and will have lung function tested routinely.
God is in control.
I was also contacted by a man in Ohio who is struggling with asthma and BO.  He is 32 and currently living with 15-18% lung function! He plans on being listed at Barnes Jewish in St Louis this fall. He is still working. Pete has given me hope!! As unbelievable as it sounds Pete is still functioning with very limited lungs! Maybe I can continue to push myself and 'milk' these poor lungs of mine. They are mine and that makes them a perfect match for me.  I am not naive, I know a lung transplant is in my future but can I hold off on starting that clock? Can I take my son to Disney and make some memories NOW, can I live in the moment ? Yes, yes I can!
God has given me some time and I'm gonna take advantage of that. I feel peaceful and I haven't felt this way in over 2yrs.
Thank you for the prayers and support.