And there it goes-lung function dropping...

We returned to Madison, Wi this past Monday for a routine follow up.  After my local visit with my pulmononolgist in late March where my lung function was 22%, my doc called Wisconsin to alert them and to discuss returning back to the active portion of the transplant list.  They called and wanted me sooner than April 21 but due to extenuating circumstances I wasn't able to get there sooner. They asked if I could wait to discuss the transplant list and I felt I could.
Monday's visit included labs, breathing tests, blood gases, 6min oximetry, and clinic visits.  My spirometry revealed a lung function of 19%.  I didn't walk as far during my 6minute walk but still walked further than most with severe lung disease.
During our clinic visits, we met with a pharmacist who reviewed all the many post-transplant meds I would be on and the enormous side effects that come along with the meds.  Its mind boggling.  The transplant coordinator came in and reviewed the protocol on being on the list and the need to get there in a timely fashion.  The transplant doctor came in and after seeing my numbers suggested I go back on the active portion of the list.  He stated that overall currently there is a shorter waiting list and a short A+ (my blood type) list, meaning that I may get a call sooner than the average 9-12mos.
He also suggested that I may need to stop working, I see sick patients and being on the list its important to stay as healthy as possible and as strong as possible. That is a hard pill to swallow, but something I will contemplate. I'm not looking forward to having the phone on me 24/7 or the tremendous battle before me.
Another glitch is my husband just started a new job last wk and our insurance will be changing to Blue Cross Blue Shield. I need this to be a seamless switch, pls pray that it is.  Benefits started on Day 1 which is great but not sure how BCBS is to deal with. I've had Priority Health for the past 16yrs and I know what to expect-I'm sure they are breathing a huge sigh of relief seeing me go.

Pray for perfectly matched lungs, seamless insurance switch, and the wait to be short.

So for now I must:

April is National Donate Life Month! And other thoughts

Sign up! Sign up! Sign up! www.giftoflifemichigan.org for Michigan residents or www.organdonor.gov for anywhere else. I never got a comment for why one decides not to become an organ donor in a previous post.  Your body won't be hacked up, you will still be able to have a viewing, medical personnel will do everything to save you, but the best part ---you will live on in someone else that would ultimately DIE without that gift of life.

If you asked me 5yrs ago if I ever thought in my wildest dreams that I would be where I am today healthwise, you would have heard a resounding NO.  Heck, I'd been through enough as a child, now I need a transplant ?!?!?! It is very surreal at times and with my recent lung function dropping again to 22% a few wks ago the reality of a transplant is creeping closer and closer.  This year could be a game changer for me--SCARY!!!!! You can't really understand until it affects you personally-there is so much involved.  Do I want to be here? NO! Do I want to stop and catch my breath if I walk too fast? NO! Do I want to die at 38? NO! Do I want to lock myself in a closet and scream and break things and hit someone in the face as hard as I can? SOMETIMES! Do I want to curl up in a ball and stay in my bed somedays? YES!
Ah, the unending roller coaster of emotions one experiences when life decides to pull the rug out from under you. Life goes on with or without you, so I will fight to keep up with the demands of life.

I go to Wisconsin in a few wks, they want to see me before putting me back on the active part of the list.  I'm pretty sure they want to make sure I can still travel there and don't look like death warmed over with this barely working lungs.  The time has come, the time has come, it is done.
Here's a great song that sums up how I'm feeling-the first line says it all.

www.youtube.com/watch?v=UUEy8nZvpdM

1 yr ago

A little over one year ago, I created this blog and started to make my story public.  Wowee, that's scary! For those who know me personally, know I'm insanely private and making myself transparent is not easy for me.  This disease is rare and I needed answers.  There isn't many answers out there, so I figured let me put my story out there and hopefully I can help others who are struggling for answers. 
In this past year, I have approximately 10,400 blog views including views from all over the world! Crazy!

Almost exactly one year ago, I also finally joined the facebook world --mainly to more easily connect with people, share my story, and spread awareness about organ donation. I created a tshirt I'm really proud of and have sold ~450 here in the US and my good pal Kirstie (whom I met thru this blog) and her family in Canada sold many shirts to support organ donation and her son Bryan battling this same nasty disease.  Here is the cool design:

I even got my design copyrighted!! Thank you to all who have bought a shirt and still wear them faithfully. It means a lot!
There is more to my story to tell--some of it I'm not ready to blog about, some of it is unknown, but most is laid out in these posts from the past year.  THANK YOU to those who faithfully read this. I've met some really great people due to this blog, thank you to those who leave comments and for praying. The support means so much..

The weather...ugh! Not a catchy title? There's more in there

I try and post regularly but also don't want to post just to post. So shall I discuss this CRAZY Michigan weather!? I'm tired of hearing the complaints but weather is neutral subject so this is some of the small talk that goes on at the beginning of a patient encounter.
Work had been eerily slow, which is ok for me as I was looking on taking some time off to recharge.
The cold air does affect my lungs and make things a bit more difficult.



I also has a sleep study a few wks back, I won't be sharing that pic of myself looking like a lobotomy was about to occur.  The study said I had very mild partial airway collapse during REM sleep only (normal is 0-5- mine was 6).  Well I'm in REM sleep at  2 different times for short periods- I'm in it 3/4 less than the norm. So no clear answers on how to get me more REM -the good Dr Baer has to get a hold of the guy.  I spend most of my sleep in stage 2which one of the lighter stages.
To be continued.

Today I met...

I finally met a living breathing person who had a double lung transplant!  He attends my church and had his transplant at U of W!  This person also is a patient at the office I work at. How about that for a coincidence? Since I don't believe in coincidences I know it is God.

After doing so much research on lung transplants and survival rates, it is easy to feel dismal about my future.  I've wanted to meet an actual person who had a lung transplant for a long time. Spectrum was suppose to arrange this but never did-they have a long way to go before they are a well oiled machine like Wisconsin. But I won't get into that now.
My pastor arranged for Randy to reach out to me and after some emails we arranged a face to face meeting today after service.

Randy was a pleasant gentleman and you would never know he had a lung transplant (kinda how I don't appear as ill as I am), how reassuring! I got to hear his story, he is still working full time and is 8 yrs out from transplant. He had pulmonary fibrosis that eventually led to his transplant. He was only give 1 wk to live before his transplant! He has had some setbacks in the last 8yrs but ultimately he says he feels great and encourages staying active.

I have so many scary statistics and facts about lung transplantation that it has been discouraging to say the least.  I now have a positive statistic in my mind who happens to attend my church.

God works in mysterious ways.

A new year...

Happy 2014! Time continues to move forward whether we're ready for it to or not. Sometimes don't you wish there was a stop button?
I can't say I will miss 2013 --there was a lot of anxiety and unknowns that I won't miss. My son started kindergarten and loves it so that is a huge positive. I can't believe he's reading! When I went to kindergarten for a 1/2 day (he goes all day), I remember letter people and playing dress up--times have DEFINITELY changed.
Some goals for 2014: 1.  I want to continue to promote organ donation and hope to get in some local libraries and spread the word about organ donation. There are many myths out there that need to be dispelled. To anyone reading this, what are some things about organ donation you don't understand or have questions about?
2. I want to try and up my exercise regimen and walk or ride a bike 4-5x/week. When you are unable to do something to full capacity it is discouraging and I hate how short of breath I become in a short time. I have to stay strong, I will continue pilates/body barre twice a week. I hope that some of my mat neighbors in those classes don't notice my sweat and increased breaths.  But then again, oh well if they do-they don't know my story.
3. We're going to get a dog --mostly for my son. He wants a brother and I can't give that to him. This is heart breaking and a whole blog on its own. I haven't been able to write it because its too painful. We have to get a hypoallergenic dog so we've decided on a schnoodle (schnauzer/poodle mix). Eric will have a at home best friend.  I also have a thing about hair so this is big for me and nice to know that this breed doesn't shed much.
4. Stay healthy as possible, my most recent lung function testing done last Thursday revealed my lung function at 26%, it was 28%. We'll see what this year holds for my lungs.
Just gotta keep on keeping on.

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 www.organdonor.gov 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: www.peterdmosher.blogspot.com


 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)