Monday, December 16, 2013

Farewell Friend

1 week ago, I got upsetting news that my friend in this wacky lung journey died.  I've mentioned Pete in previous blogs, he reached out to me in June after coming across my blog.  I eagerly emailed him back, I had to connect with this person.  We set up a time to talk on the phone and discussed our unique situations with each other finding out that we eerily had a lot in common. Pete was also in the medical field, he was a physical therapist, he was young (32 at age of death), he heard many times that "You look good"-there can't be something wrong with you, and he was going to be listed for lung transplant in the imminent future, he had a supportive spouse/family/friends, he had young children, he had strong determination, etc
He had taken his 2 kids to Disney earlier this year and that was my future plan when we initially talked. He later gave me tips on how to take on the beast called Walt Disney World.

A connection was there, it was good to talk to someone who understood my struggles.
We continued to communicate via email and I talked with him one more time when he relocated to St Louis from Cincinnati and was actively listed at Barnes Jewish.

Pete had a way with words and he gave me hope. Here was a guy younger than I (was a former running star), stayed in good shape, and BAM starting feeling short of breath while running that progressively worsened. When Pete and I talked his lung function was 18%!!!!!!!!!!
18%!!!!! I'm at 28%, if this guy could still stay somewhat active and work then by golly then I could to.  Pete was my inspiration. I felt he would get new lungs and feel great again, complete a 5K with his new lungs, fists in the air--I literally envisioned this and told him so. He would be my mentor.
So when I read his blog that he passed away, I was shocked.  I had emailed him the Monday before his death and he quickly responded that he wasn't feeling well.  He ended up in the hospital the following Friday short of breath with the decision to be intubated to help his body rest.  Pete had been intubated before and did not have any ill effects, the blog entry his wife posted said they were already weaning him off the vent, I knew Pete would be ok. I emailed Pete the Monday after his death on Sat to check and see how he was doing (this was sent before I knew he died), I then checked his blog for any updates and then saw the post that Pete had passed.

This really shook me up and I cried Monday night, Tuesday, and I still tear up thinking about it.  This was not suppose to happen! I grieve for Pete's wife and his 2 young kids, and I grieve for the life that Pete should have had. Its not fair! It was a reality check for me, I thought about a bad cold or infection that could take me down. Granted, Petes lung function was worse than mine, but what if?
I can't stay in the 'what ifs' too long, its a dark place. I will continue to trust my docs and my instinct and take it day by day.  God is in control.
 I'm thankful God put Pete in my path and we were able to connect. Pete died waiting for new lungs, please consider being an organ donor. You can visit for more info.

Farewell Friend, you will be missed. You struggle no longer.
I was excited when Pete posted this pic wearing my shirt on his blog, I emailed and asked if I could use on my blog and he responded, 'Of course, that's why I wore it when I knew I was going to have this photo op'.
If you would like to read more about Pete's journey:

 MOSHERPeter Mosher took his final breath, December 7th, 2013 32 years of age. He left behind his beloved wife and partner of 15 years, Eileen (nee McGrath) and two beautiful children Adah and Eamon. He was cherished by his parents Kevin and Peggy, his brother Jeremy and sister Katie (Andrew Wright) and grandparents Mary and Roger Pierson. He will be so missed by the numerous members of his Pierson, Mosher, and McGrath-Seiffert families. Pete was a remarkable human who left this world a much better place and touched the lives of so many across this country and world in such a short time. His impression was left on the St. Xavier, Saint Louis University, St. Clare, Mount St. Joseph, and College Hill communities; his students and colleagues admired and respected him. He excelled in all he did and the world will not be the same without him. The most important remembrance of Pete, though, is to register as a Organ Donor! Visitation will be at St. Clare Church, 1443 Cedar Avenue, College Hill (45224) on Friday, December 13th from 4:00pm until 8:00pm. Mass of Christian Burial will be at St. Clare Church on Saturday, December 14th at 10:30am. In lieu of flowers, memorials may be made to the Program in Physical Therapy at Saint Louis University (please designate "Peter Mosher Memorial" - 221 N. Grand Blvd, Room 319, St. Louis, MO 63103), or to the College of Mount St. Joseph (please designate "Physical Therapy Book Scholarship" - 5701 Delhi Rd, Cincinnati, OH 45233)

Sunday, December 8, 2013

The year in review...

Dec 2012-Dec 2013
Its been quite a year! I've been feeling a bit nostalgic as it was this time last year I was in Madison, WI for a week of testing to determine if I had what it takes to become a transplant candidate. It started with ~20 vials of blood and ended with a heart cath. There were all kinds of other tests in the middle (see previous blogs) including psych testing. It was mentally, physically, and emotionally draining.  And it feels like it was so long ago yet it was only a year.  Maybe I feel this way because this past year has had so much crammed in it.

I spent 7 anxiety filled months "active" on the transplant list; feeling trapped, tied down, never knowing when the phone rang if it was THE CALL. My lung function crept up a bit in July to 28% and I really wanted to take my son to Disney and take a break from the anxiety. And after lots of discussion with my docs I became a Level 7 which keeps me on the list but on hold.

Maybe the anxiety stemmed from it wasn't my time to get new lungs, God had other plans for me. I know I have a deeper understanding of transplants and organ donation and how we need so many more people to enroll as an organ donor. I know it is my job to help spread the word and raise awareness. I have accepted this but I sometimes wonder why God has thrown so much on our plate.  But I can't dwell on the whys, I must try to trudge forward.

The year has been full of many positives as well.  I created an awesome tshirt which is copyrighted and nearly 500 people in the US are wearing and over 100 in Canada!! That is awesome!! I have phenomenal friends and family that came together and put together fundraiser events. I created a facebook page (yes I fought it as long as I could) and have spread the word thru this media and have met some awesome people and reconnected with some awesome ole pals from high school and other past life experiences.
I also created this blog to help share my story and help me share some of my feelings.  This blog has been viewed by many including those in different countries.  The greatest accomplishment for me this past year was interacting with others affected by this horrible lung disease or transplant. Bryan and Kirstie in Canada, Pete from Ohio, and Bill right here in Michigan---it has been a pleasure talking with you and helping each other in this journey.

I'm not sure when the trigger will be pulled but I will continue to fight. I am tired, I am weary, but I am alive.
THANK YOU TO ALL WHO HAVE SUPPORTED ME OVER THIS PAST YEAR!!!! It is true, you find out who will stand with you in the fire and who stays back. I could not do this without all the love and support  from friends and family. Even those that are praying for me who don't even know me, please know I am so thankful.
My husband has stayed strong and has not left my side, he has seen my tears, my bitchiness, my anguish, my pain, my fatigue, my pride, my stubbornness (I call it determination), my hope and has never left. Even when I wouldn't blame him if he did, he truly knows the meaning of "In sickness and in health." His love does not waiver and for that I am eternally grateful.

Here are some pics for the year in review:

Saturday, November 16, 2013

Organ Donation: To Donate or Not to Donate...that is the question

I had an interesting encounter ~1wk ago when I took my sister to get some testing done. The recovery room nurse was checking her patient ID bracelet and she noticed her green bracelet. The RN asked her what the bracelet was for.  Now Julie was still drugged up but was able to drowsily state it was for organ donation and then asked the RN if she was an organ donor. 
To my amazement, the RN replied, "Hmm, I don't know if I could do that."  I quickly replied that she doesn't need her organs when she is gone. Why not help someone else?  She then stated, "I hear they leave you a mess."  WHAT!!!!!!!!!!! AAAAARRRRGGGGGGGGGGGGGGGGGGHH!  Really? Really? I informed her that is not true and after organs are procured families can still have a viewing of their loved ones. I'm not sure if she was creeped out but she quickly left Julie's recovery area and I sat there dazed that a medical professional had such misinformation and wondering if one of her patients asked her about organ donation that she would say the above.
It really bothered me, not because I feel everyone has to be pro organ donation but because I want everyone to make an informed decision and its medical professionals that are giving the facts.

I told my husband the story and he got quite annoyed and thought I should write a letter about her ignorant statements. I didn't feel that was necessary. I told him I never learned of organ donation when I went to nursing school or in my graduate level schooling.  The nurse is misinformed or has no idea about organ donation. That just means more education and awareness needs to happen regarding organ donation. I will attempt to do this at any given opportunity and I am going to try and find more opportunities.

Please know that if you chose to become an organ donor, you have the possibility to save EIGHT other human lives! EIGHT!!!!!
Please know that if your drivers license states you are an organ donor and you are in a terrible accident and brought into the ER they do not stop trying to save you because you an organ donor. I heard that as a reason not to become an organ donor when I was at K-College. When a trauma comes thru the ER doors, I assure you they do not have time to search for your license, saving you is their number one priority.
Please know if you are an organ donor and you have a viewing, no one will see you in 'parts'.  Organ procurement is a delicate time consuming procedure. After they procure your organs you are sewn back together and the funeral home will prepare your body for a viewing if that is your wish or family's wish.

Please take time to watch this clip about organ donation. It will touch your soul.

For more information on organ donation and registering visit

Sunday, October 27, 2013

Follow up in Badger Country

After my husband ran his first half marathon on Sunday, Oct 20 (great job Greg!), we quickly were in the car for our whirlwind journey to Madison. We got there later in the evening and were pretty much ready for bed.
6 days prior we just returned from our jam packed Disney/Universal adventure.  It was a fun time but very busy attempting to see the "hot "spots " in a short time.  Eric had a great time and that's what counts.
Monday morning my gimpy husband ( I told him to do stretches and he didn't listen) and I drove over to U of W. I got labs, did a 6 min walk test, got blood gases drawn, and then my least favorite test: spirometry.  Anyone that has lung issues knows this is a torture chamber and to be quite honest it looks like one as well especially when they close the door and seal you in this 3 foot wide box.
I'll see if I can link a pic:

I don't like doing lung function testing because it's hard to do, my whole future lies on these numbers, and my face turns red and I don't look cute. Haha!

My current lung function is 28%. So I'm holding steady and everyone on my team is agreeable to keep my status on the list as a Level 7 which is basically a holding pattern.
So I will keep marching forward day by day, grateful for each, praying for another.

Sunday, October 6, 2013

Check out this article by Susan Lovell

Mrs Big Dog graciously wrote an article for the Grand Rapids Press, it is currently on mlive. They said they would put it in the paper if there was room and she responded, "what better use of your paper." Mrs Big Dog has such dynamic energy and reach and I'm so grateful for her writing and for helping along this way.

Sunday, September 29, 2013

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

Monday, September 23, 2013

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.

Sunday, September 8, 2013

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.

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....

Monday, August 26, 2013

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.

Friday, August 9, 2013

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!

Sunday, July 28, 2013

"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!!!!!!!!!!!!!!!!!

Sunday, July 21, 2013

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.

Saturday, June 22, 2013

Feeling trapped...

Summer is here, its warm, vacations are being planned, travel is happening and I can't go far.
Since I never know when the call is going to come and I need to get to my plane if WI calls within a hour that puts a huge restriction on me and my family.
AAAAHHHHHHHHHHHHHHH, I want to go somewhere!!!!
Even though it hasn't been too long since I've been listed I sometimes feel discouraged that the call will never come. I just want to put the transplant past me and begin to live again. I will never have a carefree life again but at least it won't be in limbo like it is right now.
So, please never take for granted the ability to jump in a car and drive for hours to a fun location.
I'm especially bummed we can't do our annual camping retreat --sorry Mehgan and Scoot!
Anyone up for camping in my backyard?   :)

Thanks for everyone viewing my video and showing your support--it was very personal and I'm grateful for your continued support.

Monday, June 17, 2013

Breathe Event 5-31-13

The first fundraiser that my friends coordinated was aptly titled, "Breathe".  My friend Lisa aka Stuursy headed this one up with the help of others.  It was a great night and Greg and I were truly overwhelmed by the love and generosity that was shown that night.
It was an emotional night for me, I don't like to be the center of attention and telling my story publicly (face to face) was very difficult.
I have thrown aside my need for privacy to bring organ donation and the importance of this to the forefront.

Here are some pics:

My mom, mother-in-law, husband Greg, and son Eric

Pat and Leigh holding down the tshirt table

Lisa (Stuursy) Lovell

Dr. Baer and I

Mrs and Mr Big Dog, Sue Baer

Drs. Maurer and Madura

Beth, me, Emily, Joanne, Renee

Art Smith-auctioneer extraordinaire

A motley crue :)

Robin, Carolyn, Dr. Maurer, Connie, Sara

Randy Lovell MC

Beautiful family photo done by Emily Moelker

Look!! I got pink lungs, just need the human kind now...

Greg and I with Eric

Mehgan, Lisa, me, Beth

Here's a video that Matt Trubac with TruVision created for the night.