Saturday, December 20, 2014

Mollie HOME!!!

Just wanted to let everyone know Mollie is HOME!!! The local paper and tv news did a story about her one more about her and the journey (see link below) and the other about the importance of being a organ donor.

What an amazing journey it has been, I have started to write something, I am not sure if it will be a class, speech, book, blog or something just for me but the whole process has been extremely humbling and making me realize how precious life is, how quickly it can change and how important the little people in your life are that you often take for granted.

With that said I hope everyone has a GREAT holiday season, Merry Christmas, Happy New Year and know the I appreciate everything you do for my family, the fire service, the schools, our communities and our church’s, but again especially what you have done for me and my family and we love you!


Thursday, November 27, 2014

What we are thankful for this year By Steve Pegram

Twenty-five years ago, before most people across our country knew who he was, my good friend, mentor, brother and adopted father Billy Goldfeder invited me to his home in Virginia for Thanksgiving. The first year it was me, Billy’s wife their three little kids and a crazy friend from Florida. At dinner Billy asked each of us what we were thankful for? In recent years that Thanksgiving dinner of 7 has transitioned into a table of more than 40 people. As the “kids” became adults, they have their own kids and many new friends and families have joined in the annual tradition. Billy still asks each person to briefly say what they are thankful for and let me tell you over the past 25 years there have been a lot a laughs and a lot of tears at that thanksgiving table. The tradition continues today, but for the first time in 25 years I wont be there.

Thanksgiving has always been my favorite holiday of the year, I think for two reasons:

1. It is the least commercialized (no cards, no gifts and until a few years ago no shopping). 
2. It is truly a time to spend with our families and friends and reflect on what we are thankful for.     

Normally for me to miss this thanksgiving tradition would NOT HAPPEN! under any circumstance, but this year I am missing this tradition and it is so I can spend it with my family (Mollie, Jack and Riley) as we celebrate the greatest thanksgiving ever!

As most of you know my wife Mollie got sick, very suddenly three years ago. Her disease, pulmonary fibrosis progressed over the past three years quickly. Mollie’s doctors stated a lung transplant would be the only thing that could save her life. Mollie was “listed” for double lung transplant at the Cleveland Clinic in May of this year and we started to wait. First we cancelled our summer vacation and other plans because we thought surely the call to go to Cleveland would come soon, but that didn't happen. Summer came and went with no call and Mollie continued to get sicker. When the kids went back to school in the fall both Mollie and I were very discouraged, we had hoped to get the transplant call while the kids were off and everything would be so much easier, but that was not the way things were going to work.

By September Mollie was failing her lung test’s and the doctors at CC started to warn us that hospitalization pre-transplant might be needed. By October Mollie and I knew she was starving for air and the only way to get her the oxygen she needed would be in the hospital. On October 17th (The third Friday of October) I drove Mollie to the Cleveland Clinic where she was admitted to the lung/heart transplant unit. Ironically Mollie’s first hospital visit of this disease was on the third Friday in October 2011, exactly three years to the day.

At CC they increased her oxygen to almost 30 liters, for those of you who are not EMS people thats twice the flow we can deliver by mask in an ambulance to a patient and sounds and feels like someone is shooting an air compressor hose at your face. In the hospital Mollie was finally getting enough oxygen, but her lungs continued to deteriorate at a rapid pace. During this time I drove back and forth between home near Cincinnati and Cleveland multiple times as did Mollie’s parents, sister and other friends and family. We took care of the kids at home and tried to make their life as normal as possible while also carrying for Mollie. We tried to make life in a hospital bed as comfortable as possible. On the weekend of November 8 - 9 I was in Cleveland just for a weekend visit, but I felt like I needed to stay a few more days.

On Monday November 10th the doctors told Mollie that her breathing was getting too hard, she wasn't oxygenating her blood enough and damage to her other vital organs had started and would progress which would be very very bad. The doctors recommended we put Mollie on ECMO (Lung ByPass) which is a surgical procedure that would also require a trache to be inserted in her throat. Mollie was very upset, as a nurse for more than 15 years she knew that this was the end stage/last resort treatment for a patient awaiting a lung transplant. It would mean Mollie would leave the comfort of a private hospital room and be moved to the ICU till transplant and potentially be placed on a ventilator. The doctors assured us that ECMO would keep Mollie alive longer and healthier to await transplant. 

Around 1 PM Monday I updated Mollie’s blog http://waitingformysecondwind.blogspot.com as well as our Facbook and Twitter sites asking for prayers for Mollie, as well as the doctors and the procedure she was facing. Our pastor driving home from an appointment prayed in his car, many of our friends texted us, posted, re-posted, tweeted etc prayers across the country for Mollie and this difficult next step in this process. Mollie was scared, I was scared, but we put our trust in each other and especially our faith and trust in God that things would be OK. 

Around 2 PM the surgeon who would do Mollie’s ECMO surgery came to meet with us and answer any questions before she would sign the consent for surgery. Literally as Mollie was signing the paperwork her phone started to ring, the caller calmly said “Mollie we think we have your new lungs”!

Imagine the joy, excitement, fear, love, and every other feeling/emotion you have ever had; when you got married, when you got engaged, when you saw your first born child for the first time and then triple those emotions and thats how I felt all at once. Mollie and I hadn't really talked about it but thru the unspoken words that only spouses can communicate threw both Mollie and I knew the end of her life here on earth was close and now she would get that second chance we had almost given up on. 

We received at that moment a true answer to prayer, our prayers, our friends prayers, our families prayers all at once lifted Mollie up and gave her the second chance, the second wind we had been waiting for. 

We quickly packed weeks worth of decorations pictures, clothes, flowers etc so Mollie could be moved to pre-op. When you are a transplant recipient there is not much you know about the donor, where its is coming from? who? how old? what happen and after a little while and it all settles in you realize in this moment of your greatest joy for a “second wind” some other family somewhere else had to say goodbye to a loved one in order for Mollie’s life to be saved. I said many prayers that night; for Mollie, for the doctors, but especially for the donor’s family for if they hadn’t made the decision to donate organs Mollie’s life wouldn't have been saved that night. 

Family and friends scrambled to pick up kids and others headed to Cleveland. Mollie’s Mom and Dad arrived and were able to visit with her for a few minutes, one of our pastors Elder Justin Huffman also arrived and said a prayer with Mollie and I bedside in the ICU. My best friend since I was 12 Ed Kline jumped on an airplane in Philadelphia and arrived in Cleveland just after midnight to sit with me during the 10-hour surgery.

Mollie went into surgery just before 2AM on 11-11-14, Veterans Day. We didn't get any updates for almost 6 hours, to say it was the longest night of my life would be an understatement. I walked, prayed, eat, tried to nap, walked, paced, eat, tried to nap for an eternity. Just before 8 AM we received a call that the surgery was progressing well, everything looked good. A small relief, but still we wanted to see the surgeon and hear it from him. Around 10 AM Dr Tong walked out to meet with us the surgery was over, the lungs looked “perfect” and overall the surgery went well. Just before they started the surgery there were some complications that I wont go into, but lets just say Mollie took a peek at heaven for a few minutes and decided to stay with us here on earth! What a blessing! The doctors only concern was would Mollie wake up? 

We got to see Mollie a few hours later, still asleep, intubated in the ICU. As I leaned over and whispered in her ear that the surgery was over, she had new lungs and the doctor said they were perfect. Tears rolled out of the corner of her eyes. We had discussed pre-operation if she would be able to hear me when she was asleep? Mollie told me “just talk to me” so I did and  apparently she could hear me and that brought comfort to me knowing that she knew she was going to be OK.

The next few hours was monitoring her in the ICU, she would wake up and look at me, nod yes and no to some questions before she would fall asleep again. The ventilator was removed and Mollie was breathing on her own with her new lungs within 12 hours of surgery. By Wednesday morning the breathing tube had been removed and Mollie’s “second wind” was working on its own. It was amazing to look over and see the oxygen saturation which had been so low for so long reading 98%. Thank You God.

Mollie spent a few days in the ICU, a few more days back on the heart/lung floor before being discharged from the hospital10 days post transplant. We are now living in an apartment in Cleveland. Transplant patients have to stay near the hospital for several weeks for checks up and meetings with the doctors. The biggest thing they are watching for is rejection, our body has a very sophisticated immune system and it will detect and attack the donor lungs as not belonging. To combat this the doctors placed Mollie on a host of medications to trick her body into not rejecting her lungs and allowing them to heal.

Early on in this process the transplant coordinators told us that we need to prepare financially for the post transplant medical expenses. They told us how important it was to raise money. Neither Mollie or I felt comfortable with asking people for donations, quickly a group of our friends led by Steve Oughterson, Billy Goldfeder and the Goshen IAFF Local assisted by many others did it for us. While Mollie was still at home they had a dinner with a silent auction in her honor. The group was able to raise several thousand dollars for Mollie’s post transplant care and medications. They started a tax deductible donation website at helphopelive.com for Mollie and hundreds of friends, family and even strangers donated to Mollie’s campaign. 

It all paid off in a big way. While still in the hospital they provide the patient and their care giver (me) several classes on signs and symptoms of rejection, PT and pharmaceuticals. They then run all the meds that have been prescribed for you thru your insurance company and then tell you the cost for the first 30-day supply. Mollie’s medication for the first 30-days was $3,600 after insurance. What a blessing to know that we had the money to pay for her medication thanks to the giving of so many of you! The doctors told us the first few months would be the worse, but as some medications are weened off the cost would go down to closer to $1,000 a month. So far we have the first few months of medication paid for; so thank you for all of you who have donated to Mollie’s fund.

That pretty much brings us today, Thanksgiving. So what am I thankful for? 

I am thankful for:

First and foremost Mollie, my wife, my friend, my babies momma and the gift of her second wind.
My kids, they have been super through all this and seem so easy to just live out of a backpack for months.
Jolie Autry, Mollie’s twin sister who probably in a weird twin sort of way was closer to how Mollie felt than anyone, Jolie watched our kids, loved them like her own, stayed with Mollie when I had to work, coordinated fund raisers, updated friends and family and was an absolute rock throughout this whole process. 

The rest of our family, especially Mitch (Jolie’s husband), Nick and Judy Sargent her mom and dad who also pulled multiple shifts at home with the kids, babysitting so I could go to a budget meeting, dog sitting etc. I have often said even before this event that one of the biggest bonuses of marring Mollie was gaining her parents, they are my best friends and I call them Mom and Dad like they are/were my own.

My Mom and Dad, They dropped everything and came to visit for several weeks and helped around the house, cleaned things I just didn't have time to, cooked dinners and provide some other support that only they could. They must be coming back because they left cloths in the closet and a suitcase, and thats OK with us.

The doctors, nurses, PCA’s and entire staff of the Cleveland Clinic. What an amazing place. We will be forever in debated to them for saving Mollie’s life and thru the process made some great friends, but also met many other families who have or a re going thru the same journey what a great place, its like the disney world and FDIC of the medical field all wrapped together.
The donor and their family, you are unknown to us but we are so thankful they choose to be a organ donor.

Steve and Deborah Oughterson, long time friends Steve and I both worked together at LSFD and we use to be neighbors. Steve has stepped up to do anything big or small, totally handled coordinating fund raising activities etc and even cut my grass and raked my leaves etc while I was in Cleveland. For those of you who are firefighters Steve puts the “brother” in the word “Brotherhood” and he always does it quietly and without any fanfare, thanks Steve O

Ed Kline, Ed has been my best friend since the early 1980’s, we became firefighters together, we were best man in each other wedding’s and talk regularly by phone. Mollie refers to Ed as my other wife, and honesty how many of you have a friend who with less than an hour notice drops everything he was doing and fly’s to Cleveland to hang out while Mollie was having surgery. Thats the kind of guy Ed is he would give the shirt off his back even though it would be a few sizes to big and not even ask why I needed it. thanks Ed.

Billy G, Teri and their family, just like Billy updates the fire service he updated many of you and served as the unofficial secretary of this little journey. He made sure everyone was in the loop and also consulted with experts all across the country to make sure Mollie’s care was the best and right choice. Thanks Billy, don't forget who was the original thanksgiving guest and save us our seats for next year.

Goshen Fire and EMS, especially Captain Robert Rose who has been serving as acting Chief off and on for the past few weeks. When I checked in with them I would get the same answer “Chief we got it” and they did. I am so proud to be their Chief and all the accomplishments we have made together over the last five years, but especially the love and support they have shown me and my family more recently. 

My boss Ray Snyder and the Goshen Township Trustees Lisa, Claire and Lois as well as our Fiscal Officer Cheryl who coordinated fund raisers, offered food and babysitting and when I tried to come to work told me to go home and take care of my family, thank you!

My kids school Milford Christian Academy, they raised money, sent cards, offered to baby sit, tutor, dog sit, cut grass and do anything we needed. Most of all they prayed for Mollie, me and the kids fervently and we felt their prayers working in our lives and especially in Mollie’s. I LOVE our school family.

My IMAT chief’s, those are the fire chiefs who boarder Goshen and respond on serious calls, they all have stepped up both in responding to calls in my absence but each of them routinely checked in and offered support. Thank You Chef’s Huber, Rose and Kelly!
The Board of Directors and Membership of ISFSI and Pennwell/Fire Engineering these fire service groups stepped up and took care of huge projects during my time away and also reached out all across the country to rally support for me and my family. The hundreds of prayers, post, emails, tweets, donations and phone calls were greatly appreciated and almost always came at the most low and opportunist time.
Our Church, another one of the greatest gifts I got by marring Mollie (besides our kids, her family, her parents, her crazy friends) was our church! Mollie is the 3rd generation attending Cincinnati Primitive Baptist Church. Pastor Lassere Bradley has been there for more than 50 years and baptized Mollies grandparents (Both sets), parents, brother, sister, Mollie, me and now Jack. He also married Nick and Judy as well as all the kids. To say we are a little close to our pastor and our church family would be a huge understatement. My faith in our lord and savior Jesus Christ, my salvation thru gods grace is all because Mollie took me to church with her, after wandering the earth unfaithful for so many years I found exactly what I was looking for in a church and a family at CPBC.
On Sunday 11-16 Brother Bradley spoke about Mollie as he used Philippians 4:13

“I can do all things through Christ which strengtheneth me.”

So as I celebrate my favorite holiday, Thanksgiving with my beautiful bride and our awesome kids I want to remind each of you that God is great, God answers prayers and we all can benefit from being a little less selfish, a little less worldly and a little more giving in our life in a lot of different ways. 

Your prayers saved Mollie’s life and that is what I am most thankful for this year! 

What are you thankful for?

Love 


Stephen

Monday, November 24, 2014

So excited to report that I had my 2 week(!!) post transplant appointment today. Everything looks great. My Doctor was THRILLED (her words!!) with my progress so far. My new Lungs are clear, vitals are great, and (based on blood work only) my body isn't "angry" as they say at the new lungs yet. No inflammatory response yet- that's awesome, and my body (liver and kidneys especially) seems to be handling the anti rejection meds well (except for a few expected side effects). I'll have a bronchoscopy next week to have some biopsies done and that will give a very clear picture of how they look on the inside, but this is the best possible news We could have asked for today.
Finally got some rest now that I have been out of the hospital for a few days. Steve and the kids are here for the week to spend thanksgiving together. I have been doing my excursuses and walking the halls here and am amazed at how well my new lungs work. Its almost hard to get use to breathing normal again after struggling for so long.

So continuously thankful to God for His daily miracles and mercies (and yes they are daily!) and I could never thank you all enough for the thoughts, prayers and support. 

Saturday, November 15, 2014

Steve here, thought I would give the whole week-long synopsis:

Sunday, Mollie was doing very poorly, not able to catch her breath, pulse was racing and her oxygen saturation was dropping dangerously low. Doctors recommended putting her on ECMO, which essentially is a lung bypass machine. This procedure would require surgery, and they would insert a tube about the size of a garden hose in her neck which would take the blood directly from her heart, filter and oxygenate it with a machine that bypasses the lungs and then pumps it back into the heart for distribution to the rest of her body. Once in place,  her lungs wouldn't work any more, ever, but it would keep her alive a few more weeks in hopes that a match would be found. As you can imagine, this was probably our lowest point in this three year journey, and we spent the night Sunday worrying and praying for wisdom, knowing that without this radical step or a new set of lungs, Mollie's life could be cut short very soon.

All along, Mollie has been listed very high on the donor list. The delay had been her size. At 5'2", she is considered small for transplant and most donors are adult males who are typically 5'10 -6'2", therefore their lungs won't fit. 

Monday, the doctors returned and told us if we were ready, they could perform the surgery to place her on ECMO that afternoon.  I posted an update on Mollie's blog and Facebook, asking for prayers on her behalf and several of our friends and family shared that request and "tweet's" were sent out all across the country, through friends and several firefighter networks as well. An hour after posting the prayer request for Mollie and the ECMO surgery, the doctor returned to get her written consent for surgery. As Mollie was signing the forms, her cell phone rang, and the voice on the other side of the phone very clearly said, "Mollie, we have lungs for you!"!

Prayers were answered just when Mollie needed them the most and the path of her life instantly changed. Instead of prepping for ECMO, we prepped for transplant! Doctors, nurses and techs from all over the hospital ran into our room to congratulate us on the good news. Mollie's nurses openly cried with her at the bedside, and tears full of fear moments before were replaced by tears of joy!

We quickly packed up her room where she had lived for three+ weeks, called the family, and she was moved to the ICU to be prepped for surgery. They do not tell you anything about your new lungs, where/who they came from is confidential. The only information we were told was that the surgery would be early in the morning on Tuesday. There was still several go/no-go hurdles we had to cross. The donor is tested for lots of diseases and other contra-indictors, just to make sure the organs are suitable for donation, and if everything looks good its a go. Next, a surgical team is sent by ambulance, helicopter or jet to harvest the lungs from the donor, and if they don't look good the surgical team can deny the lungs; they looked great, so we were still a go for transplant. Then the lungs arrive in Cleveland and the surgical team here inspects the lungs before surgery.  They determined that the lungs looked really good and we were given the green light for surgery around 1AM Tuesday. 

By this time, Mollie's parents and one of our pastors, Eder Justin Huffman, had arrived and we all sat with her and prayed with her as her anxiety was thru the roof. Mollie was having a very hard time breathing and the doctors were trying to calm her and keep her stable. Around 01:45 they took her back for surgery and we headed to the family waiting room to wait for news.

8 long hours later, her surgeon, Dr. Tong came out to let us know the surgery was over. Dr. Tong told us the lungs looked perfect, and the surgery overall had gone well. 

Mollie was in the ICU Tuesday - Friday. The first few hours she was sedated and intubated, but if you talked to her tears would roll out of her eyes and she would move her eyebrows. She had the tube removed from her throat and was breathing on her own with her new lungs within 12 hours of her surgery. Thursday she was sitting up, no longer sedated, talking, etc. Other than not getting any sleep, she was doing great. She did have a paralyzed vocal chord, which complicates swallowing and talking. Friday, they injected some gel into her left vocal chord, which appears to have fixed the problem. They tell us it is common with people who were intubated for an extended period of time.

Friday afternoon, after they did a swallow study to make sure she could eat properly, and after the vocal chord procedure she was discharged from the ICU, back to the 8th floor where she resided pre-transplant. She is back in a nice private room with more peace and quiet. She will start physical therapy bedside tomorrow and as long as there are no complications she should be released from the hospital by Thanksgiving. 

She is required to live in Cleveland for about 6 weeks. We have rented a furnished apartment for us to live in as she will have frequent visits to the Cleveland Clinic for check ups and tests. As long as there are no complications each week she will have fewer and fewer appointments, until they finally will let her go home. She will be on a host of medications for the rest of her life, these medicines are expensive ($1,000+ a month) after insurance, but will hopefully prevent her body from rejecting the lungs, which is always the major risk of any transplant. To help with the life long medical expenses Mollie has a taxer fundraising account set up at https://m.helphopelive.org/campaign/5178
The whole process has been amazing, from the care we have received, to the miracle gift of new lungs. More than anything, we have seen the HUGE benefit and power of prayer! We rejoice in God's grace and mercy on us and the miracle of the new life Mollie has been given. We also continue to pray for the donor's family, as they are unknown to us.  But their loss is our our gain, and we are so thankful they chose to be a donor family.

Thanks for your care, love, prayers and support.

Steve

Monday, November 10, 2014

Hey friends. Just thought I'd give you a short update. Still waiting for those lungs. Unfortunately, they are starting to think that I may need to be moved to the ICU to continue my wait. I'm holding my own and I'm stable for now, but the fear is if I take a bad turn it could go downhill fast. So I'm hoping I'll prove them wrong and I'll keep maintaining here, but it's a very real likelihood that I'll end up there in the next few days.
 
Please pray for me. It's obviously very scary and also discouraging to still be waiting for lungs. But I certainly know and trust that God's in control. The lady who cleans my room said "honey he didn't bring you all this way just to drop you off!" I know that's right and I ask that you guys all keep praying for me and my family 

Saturday, October 18, 2014

Posted by Mollie's husband Steve:
3 Years ago today I got a call at work to go immediately the the ER, My wife Mollie was very sick. After several weeks in the hospital and several months of follow up visits and specialist we finally learned that she had Pulmonary Fibrosis. Unfortunately in her case the disease was serious and predicted to get worse, and it did. Over the past three years her use of oxygen to help her breath has increased. In June she was listed for a double lung transplant and we have been on 4-hour stand by ever since. Today 3-years to the day of when she was first hospitalized by this disease she was admitted at the Cleveland Clinic, no lung transplant yet, but her/our ability to manage her breathing and dependency on Oxygen has become to  much to handle at home. Tonight she is resting in the heart and lung transplant unit getting the oxygen therapy she needs while continuing to wait for the perfect set of donor lungs. So many of you have supported Mollie and I in so many ways over the past three years and I have just a few more request:

1. Pray for Mollie, that a match will be found, transplant will be done soon and her recovery will be swift and complication free.

2. Pray for my kids Jack and Riley who's new normal has been a sick Mom and they have been GREAT (so has Mollie), but now are stuck with Dad for a few months :)

3. Pray for the donors family, whoever they may be? for in order for Mollie to get a new lease on life someone elses family must suffer a great loss.

4. Be a donor, sorry to be blunt but most of my FB friends are firefighters, nurses and cops so you should get it; once your dead you don't need your heart, lungs, liver etc wouldn't it be great to save someone else's life if you could?

It has been amazing what I have learned and observed over the past three years, it puts a whole new perspective on life, priorities and faith. Mollie (and I) will be updating as our journey continues:.
 

Thursday, October 2, 2014

Looks Like it's about to Get Real

Earlier this week Steve and I headed back up to Cleveland for my monthly checkup.  My numbers have fallen again and therefore my LAS (listing score) has gone up again. At this point I am in what is about the top 5% on the list for people waiting for a double lung transplant. I have been passed over multiple times at Cleveland because of my size. To put it in perspective lets say Cleveland did 5 transplants last week.  Based on my blood type and antigen match I qualified to receive 4 of those lungs.  However they were all too big.  Basically I need a petite size small.  A normal man sized set of lungs are 6.5-7L capacity.  I need a 4.2-4.8  which is pretty small. So in a nutshell that is what we are waiting for. The perfect lungs.

My doctor thinks the transplant will happen very soon, especially with my LAS score increasing. She really wants me to think about being admitted ASAP.  In the hospital I can do preop "rehab" (exercise) focus on my diet, nutrition and have a large amount of unlimited oxygen that I'm constantly having to refill here at home. My jobs here as wife, mom, social director and secretary at this point are leaving me exhausted to the point that I'm probably NOT resting enough, eating enough, or just taking good enough care of myself. Frankly at this point just packing lunches and folding the laundry leave me physically spent.

Obviously we weren't ready to stay in Cleveland, but the Dr strongly suggests we rethink this in 2 weeks. So the plan now is to sort of tie up loose ends here and head north in a few weeks if not sooner.

We are immensely blessed to have an amazing family, friend, community and church support system. My sister, Jolie and my Mom,  Judy will be the ringleaders of this circus here while I am gone.  Steve will be bouncing back and forth and I have a list made of school friends, family friends, neighbors and church folks who will be filling in the blanks. And if you see my kids or Steve give them an extra hug from me...they probably need it.

So, Please keep us in your prayers. We are continually praying for the perfect lungs at the perfect time - God's perfect plan. I'm not afraid. (I'm a little worried Jack won't pass 6th grade without me micromanaging him, and Riley will go to school with ratty hair, but that's another story... )
I am not afraid. I am ready. And so grateful that this is even an option.
We'll keep ya posted...

Wednesday, August 20, 2014

Just an update...

It has been a little while since I updated, so here's where we are now.
Steve and I went back up to the Cleveland Clinic on Monday. Nothing new.  They just want to keep a close eye on me - mostly my respiratory status, so until I am transplanted I will be going once every 4-5 weeks for a quick checkup. I gotta be honest I really really hope that I get "THE CALL" before we have to go back up. While we have come to absolutely adore my pulmonologist and her crew, I'm getting sick of blood draws, arterial blood draws, pulmonary function tests and walking evaluations.  Every time my numbers drop ever so slightly. This is a good thing in a way because it makes my listing number go up, therefore increasing my chances of getting some lungs.
My doctor obviously has no real way of knowing because it is all based on a big algorithm of numbers and need (and a good amount of divine intervention)  but she says she has a gut feeling that it will happen soon. I sure hope she's right. Waiting is hard work :)
So that's about it. We'll keep you posted and in the meantime keep praying for me and my family.  If and when it DOES happen it's gonna be a huge change in our "normal" routine for a while. So while I ask you to pray for me and the actual transplant itself, I also ask that you remember my kids and Steve and the village that will be taking care if business until I can come back to my "command" position here at home. ( I have been married to a fireman too long! hhaha)
Love you all....

Thursday, July 24, 2014

Fundraising...

So this one was hard for me. I know that I'm on a transplant list and all, but I still don't consider myself ill.  Obviously I am not well, but I hate to use the word sick or disabled, while obviously I'm both.

I heard little tidbits here and there about a fundraiser for us and immediately was like.."oh no!! Not for me!! Those things are for SICK people!'  The last thing I wanted to do was sit and smile and put on a happy face while people sat around and talked about how unfair...how sad...my poor kids....and Steve.

Well I was wrong. Not a little wrong. A lot wrong. It was just what we both needed.  Fundraising is an amazing way to let a family know how much they are loved and how many people are willing to help meet our each and every need.  From the organizers of the event, community church groups ( I think one church's whole congregation came right after church ended!) a surprise helicopter landing, neighbors we had never met, colleagues, friends, family and the list goes on. Each one with a kind word, a donation, and even phone numbers for when I finally decide we will need more help.  

It was amazing and humbling at the least to know that so many people came out to support me, love my family and spend their day helping a friend in need.  

I wish I had a better way to say thank you, but THANK YOU from the bottom of my heart. You all know how to make a girl feel loved! I hope I get to a point soon where I can pay it foreword because you can believe I will...
And I'll file this one under Boy was I wrong about Fundraisers :)

(and BTW for those of you who have asked, the website we are using as a fundraiser throughout our journey is:

https://m.helphopelive.org/campaign/5178




Tuesday, June 10, 2014

Well...It's Official



I HAVE BEEN OFFICIALLY LISTED FOR A DOUBLE LUNG TRANSPLANT. Wow. Those are certainly not words I ever thought I'd be typing. It's kind of shocking to see it right there in black and white.  But to me it's more than fear and anxiety and worry, its more exciting than anything! My one chance to get my life back. It was hijacked a few years ago. Well my lungs were anyway. The rest of me thankfully is very healthy, but my lungs defected a few years back. And they are closing in quickly on becoming useless.

Most of you know that I have been struggling to breathe for a few years now. I was diagnosed in 2011 with Pulmonary Hypertension and Idiopathic pulmonary fibrosis.  Idiopathic is a fancy medical term for "who the heck knows why and how you got it. You just did" So Yay me! Winner of  The idiopathic lottery. I'd rather we had won the mega millions.

I have been on oxygen for a few years now. Carry it in my purse with my lip gloss and sunglasses. No big deal, I can handle this has been my mantra. And I have done a pretty good job of maintaining a "normal" lifestyle.  (haha)
Now that my kids are getting older and are better able to understand the whole transplant thing and now that my oxygen needs are getting to be more and more, and that I have finally accepted that this REALLY is the only "cure" for me, we finally decided that this is the time to pursue a lung transplant.

So after spending the last 6 months burning up I-71 to the Cleveland Clinic and having more tests done than I can count (even as a RN I was shocked at some of the tests that were done. Strange stuff-modern medicine! I have eaten radioactive eggs...just sayin') I have finally been officially listed for a lung transplant at the Cleveland Clinic.

I am keeping this "journal" so that my friends and family can stay up to date with me during this journey. I don't know how long I'll be listed. Could be a month, could be a year. Unfortunately, it all depends on the sad fact that someone healthy has to die in order for me to get my healthy life back.  My size, gender, blood type and antigens all play a part in the waiting time. I have been told that being vertically challenged (aka...short) and having O- blood may make my wait longer. But I guess that's where I stop worrying about it. The timing of all of this is really not in my hands. There have been so many instances and "coincidences" that have happened thus far that I know this is out of my control and that God has a plan and a timetable specific to ME. People ask if I'm totally freaked out and I'm just not. It could be due to lack of oxygen to my brain, but I like to think God has really given me a huge big load of patience and trust in Him and therefore I really do not worry about this. My journey has already been written and I hope I can show patience, grace and courage through it.

I don't want you to read this and feel sadness or pity for me. I think everyone has issues (some more than others) with their health, their family, etc... but one thing is for sure EVERYONE has SOMETHING.   Mine is just an super exciting something.  So I ask you that as you think of me getting healthy again that you please keep my family in your prayers, thoughts, well wishes... whatever it is you do- I'll take it!    

And ...ahem...go sign a Organ Donor Card...   (that was probably not appropriate) haha

Feel free to ask any questions. I'm pretty much an open book about this whole journey and have become a "google-induced" wealth of knowledge and information of all things transplant.

So here we go, and here I wait....
xoxo