Pre and Post Transplant Blogs

The following are posts from my COTA website which has now been shut down. Going forward all updates will be posted here and/or on Facebook.

Treading Water

Submitted by Stephanie on Thu, 04/18/2013 - 9:31pm

The weeks since my hospital discharge have not been easy. While adapting to a new home routine I've also had the not so easy task of maintaining my health. In the past after a hospitalization, I was able to get back to my normal levels of energy more easily. Now I feel like a return home is just a continuation of what I was doing inpatient but in a different setting. Just like in the hospital, my days are consumed with medications, treatments, rest, eating, etc. The first few weeks out my health was just maintaining and I really felt like I was treading water. I wasn't worried about drowning yet but was glad my hubby/lifeguard was always there ready to help/save me. 

Last Friday I woke up at four in the morning with a fever and coughing up bright pink sputum. I felt like crap and was a little freaked out. Randy was there for me and kept me calm. Did I mention he was a lifeguard in his younger days? I was able to get a few hours sleep before calling my doctors office.

I've not had much experience working with the CF care center here. Would they be as responsive as my doctor back home? Thankfully the answer was yes. A nurse named Carolyn did a great job of coordinating my care via Dr. Pilewski. My steroids were temporarily increased and antibiotics were changed. All of this happened by the end of the day on Friday and I even received my new IV supplies in time to do an evening dose.

After a few days of the new antibiotic cocktail, breathing has become much easier. Instead of struggling to keep up with treatments, medications and exercise, I'm able to have at least a little time to rest. Instead of just treading water, I feel like I'm floating and taking it easy at least a little bit.
 

THE wake up CALL

Submitted by Stephanie on Wed, 04/24/2013 - 1:01am

At 2:43 AM yesterday my phone rang. Before even answering I knew what the call was. It was THE CALL. Sure enough Lisa from UPMC transplant services was calling me with an offer for lungs. Before I even had a chance to get excited she apologized for calling and mentioned that it might very well not result in transplant. After apologizing for the time of the call again the call concluded and she said they would be in touch. For now I was to stay at home.

Later that morning we got word that the donor’s lungs would not be a good fit for the size of my chest cavity. Also, the transplant team deemed them unusable as one of the lungs had pneumonia. Rather than being bummed out I was actually really excited. The possibility of new lungs is getting closer and I’m ready for this very special gift.

April is National Donate Life Month. Please register as an organ donor.

http://donatelife.net/register-now/
 

It's Happening!

Submitted by Stephanie on Fri, 05/03/2013 - 8:53pm

Posted by: Noel on behalf of Stephanie

Steph got a call today, this one is the real deal! She's preparing for her double-lung transplant as I'm typing this post! When I talked to her earlier she was a little nervous; apprehensive, very optimistic & excited, and definitively ready! The surgery is expected to begin around 10 PM and last 12 hrs. Stephanie's Mom, Robin, her husband, Randy, and others will be at the hospital during/after the surgery for support. We'll continue to post updates as we receive them.

And let's not forget, this is an important day for many reasons...

HAPPY ANNIVERSARY, Steph & Randy!
 

The Waiting is (still) the Hardest Part

Submitted by Stephanie on Fri, 05/03/2013 - 11:40pm

Posted by: Noel on behalf of Stephanie

Unfortunately, Stephanie will not be getting a lung transplant tonight because there were unforeseen complications with the donor. Please keep the positive thoughts and good vibes coming Steph's way...
 

Fourth times the charm?

Submitted by Stephanie on Sat, 05/04/2013 - 8:43pm

Yesterday was a very special day. Randy & I celebrated 16 years of marriage. My best friend and maid of honor Anne celebrated a birthday. I received my third call from UPMC transplant with an offer for lungs. The third times the charm right?

The call came at 3:15pm from my pre transplant coordinator Paul. I said “Are you kidding me?” Of course he said this was one thing he didn’t kid about. Paul is great and there are many other things he jokes about. My mom would be traveling from Indianapolis so I asked if they were fairly certain it would happen. He promised to call back quickly and let us know. On follow up he said the donor was at UPMC and the transplant team indicated the lungs looked good. The donor was a young adult and had no chronic lung disease. It sounded like a great match. I called my mom and let her know to come right away.

Even though it was my third call for lungs, it was even more surreal than the others. The first I got in Indy and was the backup person. The second was just ten days earlier and I didn’t even leave the apartment. This time was different. We were actually going to the hospital. The donor was local so it was more likely that there would not be surprises that come with retrieving an organ from another hospital. As we left the apartment, the green oxygen tubing snaking across the floor caught my eye. I almost gathered it up and threw it in the trash. I felt such a relief that my days of oxygen and hours upon hours of treatment would be coming to an end. I would go to sleep and wake up a much different person. Was I ready to be that person? Heck yeah!

Then the flurry of texts and calls began. Both Randy & I were trying to let as many people know as possible either directly or through others. I can’t even describe the emotions of telling so many you love that such an incredible experience was really happening. Randy & I both had tears of joy welling up in our eyes. We are so grateful to have such a large support network.

All the while various medical personnel were coming into my room on the transplant floor. Blood was drawn. A final chest X-ray was taken of my crappy lungs. They also did an EKG, had me give a urine sample and sign various consents for the surgery. I met with the surgical team and the anesthesia resident. My surgery was scheduled for 10:30. My mom hoped to make it before I went back to OR. It would be close.

A little after nine they took me back to the PACU (recovery room) holding area which is right next to surgery. I met with more of the anesthesia team and my IV line was started. The only thing left was to wait on the final word from the surgeon that the lungs were good. As Dr. Shigemura came out I knew from the expression on his face. The lungs were no good. He said they developed pneumonia and also cultured MRSA. He assured me that it would be OK. I am clinically stable, my lung allocation score is high, and a good match would come soon. While disappointed, I knew he was right.

We got back to the apartment around midnight. My mom, aunts Debbie & Mickie, uncles John & Jim, and friend Leah were waiting. Heather planned to come the next morning but we called and let her know. After that I really did not have much energy to spread the word. Fortunately it started spreading on its own and I focused on spending time with family and doing…TREATMENTS. Ugh!

You can’t imagine how hard it was to make myself do my treatments at one in the morning after a “dry run” of not getting lungs. But I knew that it must be done. I need to be as healthy as possible for as long as possible to get the call that is “THE CALL”.

This morning I woke up drained both physically and emotionally. My family packed their bags and we had a final lunch. My family has an innate ability to turn anything into a celebration. So today we ate Mexican food and celebrated Cuatro de Mayo. We think the fourth time will be the charm!

P.S. Please keep the donor family in your thoughts. They are dealing with a great loss today. While the lungs were not used, their family member’s heart and possibly other organs and tissues were transplanted. A big thanks to them for giving the gift of life.

 

UPDATE: Fri, May 10th, 2013 - Call #4 from UPMC

Transplant...CANCELLED

Submitted by Stephanie on Fri, 05/10/2013 - 7:00pm

Posted by: Noel on behalf of Stephanie

7:00 PM:

So here's the latest.... There was an infection in one of the lobes the donor lungs and since Steph relatively stable, they want to wait until the perfect pair of lungs arrives. As usual, Steph is doing an inspiring job keeping her sunny side up given the emotional roller coaster ride this process is creating.and all of the love and support you all continue to send her are a big part of that! So let's keep beaming good vibes her way as the waiting game continues. Let's help our pink pig get her wings!

4:00 PM:

Stephanie and Randy have been at the hospital since 11:00 AM. Both are in good spirits and anxiously waiting for the final thumbs-up from the doctor. If there are no issues then they'll begin prepping Stephanie for surgery about 5 PM. The surgery is scheduled for 7 PM. Please check back later for more details.

12:55 PM:

Stephanie received call #4 this morning from UPMC Transplant with another offer for lungs! She was scheduled to arrive at the hospital at 11 AM to begin the process. We'll continue to post updates as more details become available.

Keeping the Hospital Weird

Submitted by Stephanie on Sun, 05/19/2013 - 7:35pm

Thanks to our Austin friends Jane & Andy I had some new attire for this hospital stay. What made it even weirder was this wacky mask I'm wearing. It is a BiPap mask. A BiPap machine helps assist your body with inhaling and exchanging air better. My lungs have been retaining too much carbon dioxide, and this is a way of keeping them functioning well as I wait for transplant. I'm wearing it intermittently during the day and when I sleep or nap. It's similar to a CPAP machine but the pressure of the air varies with inhalation and exhalation instead of being constant.

This stay happened because my left lung and ribcage were having increasing amounts of pain. Eventually each breath felt like a tiny little man was stabbing me in the side with a teensy little knife. I was also starting to cough up more junk from that area and could not take a deep breath. It felt like maybe I broke a rib, had a partial collapse of my lung, or maybe had a pleural rub. The CF team agreed with me that taking a conservative approach and admitting me would be a good idea. It's not a broken rib it seems but I don't know anything else for sure except it seems to be improving. The multiple antibiotics and treatments four to five times a day are paying off.

My latest pulmonary function tests showed an FEV1 of 15% and FVC of 25% which is the lowest I've EVER been. My CO2 level was 70 which is the highest it's been in the last 20 years. The good news about all of this is that it increases my lung allocation score even more. I'm already getting frequent local donor offers but maybe this increase could help with regional or national offers.

I'm hoping to get a BiPap machine set up at home tomorrow and get discharged. Although really I'd love to just get the call now and get the ball rolling. Weird things are happening to my body and it's definitely time to get some gently used lungs.

Peace,

Steph

Come on Lucky Seven

Submitted by Stephanie on Thu, 05/23/2013 - 8:26pm

This Tuesday my cell phone rang at 3:15 am. Once again it was my pre-transplant coordinator calling with a lung transplant offer. I was still in the hospital, so called Randy's cell. I told him to go back to sleep and that I would call once I knew more.

I tried to get more sleep but the flurry of the transplant surgery work up activities didn't allow it. It was really easy doing it all from my hospital room. The only annoyance was taking a shower with special anti-microbial soap at five in the morning.

Once again my family members hit the road enroute to Pittsburgh. This time Randy's parents were coming too. They were planning to come that day anyway so the timing was perfect.

Around eleven Randy & I were taken to pre-op holding. My mom and aunt Mickie made it a little later. By 1:00 we heard the news. Once again the lungs were no good. This time they had pulmonary hypertension. Aunt Debbie and uncle Jim arrived and everyone went out to lunch. They planned to go back home after eating.

I had an echo test done of my heart and then had a turkey sandwich box lunch in my room and relaxed. After getting five calls for lungs and not having them work out I was getting a little bummed out. This really felt like the one. Then I got a call that Debbie started feeling dizzy and nauseous and the family was taking her to the ER. Six false alarms were taking a toll on my family too.

My mom and Mickie left for home and Debbie was about to get discharged from the ER. Then my nurse came in. I was now one of two backup candidates on yet another offer for lungs. I couldn't believe it. Two calls in one day was insane. Because of Debbie's ER trip she and Jim were still on the property, and mom and Mickie were just an hour away. Randy's parents were almost here too.

After taking yet another anti-microbial shower, the waiting began. I couldn't have anything to eat or drink for most of the day and was feeling pretty frazzled. We passed the time discussing what my chances of getting transplanted this time were. This was my first time as a backup. The primary candidate was sicker than me but very small. I knew nothing about the other back up. At one point my nurse asked my height which would be a consideration in choosing candidates.

Around 10:30 we were back in pre-op holding again. After some sleuthing, we determined the family in the next holding room was the other backup. He was an older gentleman. There was no sign of anyone who matched the description of the primary. Could they have passed the primary over already due to size? I seemed maybe as we only saw the doctors talking to us and the older man. I surmised that he might have emphysema and be a single lung candidate while I was waiting on both lungs. Everyone got excited that this finally might be the time.

Around midnight the docs talked to the other family. Then they let us know the news. The right lung was too damaged to be saved. The left would be used for the other back up candidate but I was not getting transplanted...again. I was happy that at least someone got transplanted but couldn't believe that we'd all gone through two calls and two times being let down in less than 24 hours. Even the doctors were having a hard time coming to terms with it.

The family went back to the apartment and I went back to my room. Once again I had my turkey sandwich box lunch. But this time I got a side of Xanax and a sleeping pill.

Now I can laugh about it all. It's starting to remind me of the movie Groundhog Day. In it Bill Murray kept repeating the same day over and over until he got it right. I will just keep doing the same. If I have to eat twenty hospital turkey sandwiches then bring em on. Maybe next time the lungs will be perfect and just the right fit for me. Come on lucky seven!!!

Please Let Eight Be Enough

Submitted by Stephanie on Mon, 06/03/2013 - 7:44pm

June 22nd 4:55AM

The phone rings. The area code is 412. First of all the only call that comes this early is something important. Either it's good news or bad. Sometimes it's both. This time it was my transplant coordinator Paul. He was calling with an offer of lungs. Getting this seventh call was good. I've got so many friends waiting on the same call all over the country. They go to bed each night hoping to be woken up the same way. I should be and am very grateful to have gotten it. Even though I joke about getting so many I'm so lucky to be in the position to get them and do not take them lightly.
             

The bad part was that the donor was considered a CDC high risk donor. The Centers for Disease Control labels certain donors as high risk based on their behaviors. IV drug users, male homosexuals, prostitutes, anyone incarcerated, and a few others are included in the group. These behaviors increase the risk that they may have contracted HIV and/or Hepatitis C. These donors have testing done to make sure they are not currently infected. However, there is a very small risk that they have a recent infection (e.g. used a dirty needle when they overdosed) but it is not yet detectible in large enough amounts in their bloodstream. These lungs might very well have been virus free. In all likelihood they were.

 After taking a few minutes to think about it, I decided to decline the offer. It was a hard decision to make. Getting so many calls and having them not work out is getting emotionally draining. My overall health is not good either. But it could be worse. And I'm stable. If I were even sicker I might have chosen differently. I little voice in my head told me to be patient and wait.

So now I'm back to waiting for the "perfect pair" again. Hopefully eight is enough.

How am I really???

Submitted by Stephanie on Sun, 06/09/2013 - 7:00pm

A recent Facebook message from my friend Julia inspired this post. She had the following thought provoking questions: "How are you? Are you scared? I know you've got to be beyond hopeful. But really, how ARE you?" My response was: "It is pretty wild that 20 years has past [since I was almost transplanted in 1992].

While there are short lived periods of scariness, mostly right now I feel at peace. I know in my heart of hearts that I've done a good job of not only surviving but living this last 20 years. And I'm so grateful (que Dead music) that I've had Randy with me all this time and friends like you." Finding peace is one of the greatest achievements in life. When you have peace everything just falls into place. Bad times can bring you down, but only until you realize they just are. Then you can move past them with grace, calm, and peace. Even though I've found some peace, it is not constant. There are times I freak out or get inpatient during this wait for new lungs.

However, knowing peace does help me realize that no matter what happens in the transplant journey, things just are what they are and ultimately I can handle it. Life just is. I hope to enjoy more of it and have faith that I will keep "living the dream" for many years to come. The rest is out of my hands.

Peace be with you, Steph

 

Cupcake Crusaders for COTA

Submitted by Stephanie on Sun, 06/30/2013 - 4:44pm

It really is a small world. My dear friend Lisa L in New Orleans shared my story. Her friend Lisa W started following my blog. Lisa W happens to be from Indiana too. Not only that, she and her daughter Abby also got help with transplant expenses via COTA. Several years ago Abby had a kidney transplant with her father as the donor. Now Abby, her best friend Abby, her brother Ethan and over ten other kids are helping me. They plan to have a fundraiser to raise funds for COTA in my honor. I'm so grateful and am blown away by their enthusiasm and thoughtfulness.

If you are in northwest Indiana please stop by and support the kids.

Lemonade and Cupcakes for Life Stand

Sunday, July 7, from 11-2
Lemon Tree Mediterranean Grill
356 Indian Boundary Road, Chesterton, Indiana 46304
 
You can also make donations online at http://bit.ly/CotaforStephR If you donate online please write lemonade or cupcakes in your comments so we can let the kids know how many people participated in the virtual world too.

Here is the story from their mother Lisa about how it all started:

"Hi Stephanie! I don't know if you know how it all started. At about 11:30 Saturday night Abby and her best friend Abby told me that they wanted to set up a bakery with REAL baked goods. I said "Can we please talk about this tomorrow?" To my dismay, by morning (as in 6am) the two of them had planned a cupcake stand and brought along big brother Ethan for the madness. I told them that these things take a little planning and that we live on a pretty quiet street and they would need signs and plan. Then I added, "You may get more interest if you have a cause for your cupcakes."

They tossed around a bunch of ideas and they just couldn't agree on anything. Then I remembered you. I mentioned your situation and the three of them started smiling and nodding and that turned into jumping up and down. Abby had her happy tears. Then the ideas started flowing. I know that we have never met and that is probably odd. But, Abby is a COTA kid and has been through a lot medically so this is dear to her heart. Her brother and best buddy have been there with her all the way. Your lung transplant is something that they are so excited about. Ethan said, "I sure hope that we can meet her!" Anyway, Lisa has told me about you and I started following your blog after I saw something on Lisa's facebook about your transplant. The kids have now gotten 5 families involved totaling about 14 kids."

Transplant Update

Submitted by Stephanie on Fri, 08/30/2013 - 6:30pm

Friday, August 30, 2013

6:30 P.M - Stephanie was discharged from the hospital...

Great news, everyone! Stephanie is getting discharged from the hospital today!!! Just think - two weeks ago yesterday she received her life-saving double-lung transplant, and today she will be able to go outside and breathe some fresh air! Amazing!!!

Thursday, August 29, 2013

A message from Steph's uncle John Watts - "My niece Stephanie Rath and (her mother) my sister Robin Devine two weeks after Stephanie's lung transplant!! All chest tubes out and if all goes well tonight getting out of the hospital tomorrow!!!

Hey "COTA for Steph R" Community!

Thanks to you, your friends and family, your colleagues, the FB community, EVERYONE - we have topped $50,000 raised for COTA in honor of our dear friend Stephanie Rath!! Our goal is $65,000, so we are not all the way there yet, but we are over 75% of the way there!!! Thank you, thank you, thank you!!! If you would like to donate or want to remind people you know to donate, here is the link: http://cota.donorpages.com/PatientOnlineDonation/COTAforStephR/

Hey everyone! Since Steph is still in the hospital, though hopefully for only a few more days, let's send her more of the e-cards (you can send her FREE cards to her room that are printed by the hospital using this link: http://ecards.upmc.com/) She is so touched by everyone's love and concern, so let's send her more cards during these last few days in the hospital! :)

Wednesday, August 28, 2013

Stephanie is feeling much better today. The trapped air is almost gone and one of the chest tubes has been removed! The other tube may come out tomorrow. She's hoping to be discharged on Friday or Saturday.

Monday, August 26, 2013

Good morning I'm Steph Rath. Here are today's top stories.

This just in from Room D955 at the UPMC lung transplant ward:


Started what felt like the "best walk ever" on Saturday afternoon and even managed to skip two steps. Then the last part of my walk my oxygen stars dropped below 90%...REALLY???

Felt more short of breath the rest of the day and Sunday...REALLY???

Now have a bronchoscopy scheduled for today (Monday). They will take a look inside my lungs and clean them out as needed. A tissue a sputum/mucus sample will be taken as well. The bronch is done under conscious sedation - I will be awake but then they give me drugs to forget it ever happen. Sounds like a really bad date. Then they will put a bite guard in my mouth and stick a big tube with a camera, suction, etc down my throat...REALLY???

My Prograf levels dipped low Saturday and Sunday. Hey Prograf can't you make up your mind...REALLY???

Will update more later. Signing off.

Saturday, August 24, 2013

Stephanie is feeling better today than yesterday. Less pain less and less trapped air. She may be getting out of the hospital on Tuesday.

8/23/13

Well it's official, I did not set a record for getting out of the hospital in the least number of days which is eight. To be honest I'm totally OK with that. I'd much rather get discharged without major issues than get out quickly. The biggest thing keeping here is the air that still exists under my skin and is exerting pressure on the outside of my lungs and making it more painful to breathe deeply.

So, to breathe deeply I end up taking pain meds. The downside is that pain meds slow my colon and I get constipated. To combat this I'm taking lots of stool softener, senna laxative, and miralax.

It's a delicate balance figuring how much laxatives to take. Today I took too little and my ostomy slowed for a while. Then I took more and it started coming out non-stop like some sort of crazy soft serve machine. Living with a colostomy bag has it's adventures for sure.

My new projected discharge date is Monday or Tuesday. Until then the doctors are treating this air issue by keeping my chest tubes (one on each side) on suction. I'm doing well with exercise and can walk and talk for some distance without getting short of breath. How cool is that???

There was a repeat swallow test today and I was cleared for "thin liquids". This means I can eat anything I want. It was really great to be able to have ice cold water without a thickener packet.

Thanks so much to all for the outpouring of cards, chocolate, texts, FB messages/comments, positive vibes, prayers, etc. Even if I can't respond in a timely manor know how much I appreciate it all.

Peace,

Steph

8/22/13

Stephanie's doctors think she might have a leak because air is getting between her lungs & chest cavity. They are going to see if they should do something to remove the air or if it will resolve itself.

As usual, Steph's positive outlook amazes. She climbed stairs for the first time today and continues to keep her eye on the full recovery prize.

8/21/13

Two steps forward one step back: Had my daily chest x-ray this AM and it showed a slight collapse in my right lung. So they restarted suction on my right chest tube and things improved. Funny thing is if there was no improvement they would have put in another chest tube called a "pigtail".

My heart did not race today which is a step in the right direction. Heart is back in line :-)

Went for four walks of two laps a piece which is my new record post transplant. Feeling tired so hopefully I will have a really good sleep.

They are trying to increase my Prograf level. It is around 3 and needs to be over 10. Prograf is my main anti-rejection drug so hopefully an increased dosage will do the trick. Even though there are set backs overall I'm doing really really well considering. More to come tomorrow. For now I bid you goodnight.

Peace and piggies,

Steph

8/20/13

Hey all. It's Steph Just wanted to do a quick medical update post. I'm far exceeding expectations and they are planning to discharge me on Friday if possible. I'm so grateful to the donor and their family for such an amazingly perfect gift.

The only major issue right now is heart related. The last two days I've had episodes of tachycardia (racing heart rate). They are controlling it with higher doses of a medicine called

Lopressor. This is not uncommon post transplant and should settle down. The heart gets moved around a lot during surgery and is just kinda confused and pissed off right now.

I hope to catch up on Facebook, calls, etc in the coming days. For now just know how much all your love has made this an experience that is much bigger than medical science. All your energy has given me the strength and sense of love that is beyond this world.

8/19/13

7:00 P.M. - No more feeding tube! Steph passed the test today that allows her to eat thick liquids and solid foods! Her first bite was of chocolate pudding. She sends her love to all!

2:30 P.M. - Stephanie is out of ICU and in her own room at the hospital!

You can send her FREE cards to her room that are printed by the hospital using this link: http://ecards.upmc.com/ . Let's flood her with cards to let her know we are thinking of her and sending lots of love.

Because she is not allowed to have flowers in her room, Stephanie has requested that we

make contributions to COTA (http://cota.donorpages.com/PatientOnlineDonation/COTAforStephR/) instead. She also
mentioned that she LOVES chocolate. Here's the hospital address if you'd like to send her
some:

UPMC Presbyterian Hospital

200 Lothrop St. (Room D955)
Pittsburgh, PA 15213

...and again, NO flowers please!

8/17/13

Steph is off oxygen and has walked 40 yards so far today!

Stephanie will be out of the ICU today! It is unbelievable how quickly She is recovering. She

is now only using only Tylenol for pain.

8/16/13 - 12:30 P.M.

The new lungs work great! Steph is as determined as ever and is doing good for a person that has had a lung transplant! Let's send her oodles of healing energy today.

Just look at those rosy, oxygenated cheeks! The breathing tube is out and Stephanie

is sitting up and talking. Happy Friday indeed!

8/16/13 - 11:00 A.M.

The new lungs work great! Steph is as determined as ever and is doing good for a person that has had a lung transplant! Let's send her oodles of healing energy today.

8/15/13 - 9:00 P.M.

Stephanie is awake and doing really well! Her husband Randy just shared that it is hard for her to talk w/ the tube she has down her throat, so when her doctor came into check on her she hand-signaled the words "8 days" telling him she plans to be out of the hospital in just 8 days, which inspired levity and laughter from everyone in the room. That's our girl!

8/15/13 - 4:00 P.M.

Stephanie's donor was a 6 foot tall 19-year old male. What a gift that young man has given her. Let's be sure to keep his family in our thoughts and prayers as well.

8/15/13 - 3:10 P.M.

Update from Randy: He spoke with the surgeon, everything is "great." They are wrapping up the surgery now. Randy gets to see Stephanie in 2 hours.

8/15/13 - 2:00 P.M.

Here's the latest text update from Randy, "They are not finished yet, but both lungs are in and things are going 'smooth'!"

8/15/13 - 11:35 A.M.

Update from Randy; “Got word from the doctor, “Everything is going well.” Half way done.” Woohoo! Go Stephanie!♥

8/15/13 - 8:00 A.M.

At last! It is go time. Stephanie's lungs have finally arrived. She's currently in surgery. Should last until around 3 pm EST. Please keep her in your thoughts and prayers and stay tuned here for further updates.

"Home" sweet "Home"

Submitted by Stephanie on Mon, 09/02/2013 - 1:30am

Hey all. As you may have seen from photos last Friday I escaped that afternoon. My last chest tube was taken out Friday and it was decided that my care needs could be

adequately handled at home. Before discharge I was doing 4 walks of 2-3 laps a piece on unit 9D. Clearly keeping me in over the holiday weekend would be like caging a tiger!!!

Randy's parents arrived Wednesday PM and stayed until this AM (Sunday). This gave my Mom a break and she was able to head to our annual family outing in NC. We had a dinner party at our apartment with Randy's parents Friday night. Randy made Chicken Marsala from scratch. Yes I am a lucky woman! On Saturday we went out to lunch at Double Wide and also saw a movie. Then we ate pizza in.

That day we also had a visit from Shailene (Shai) Woodley. She is the lead in a movie called The Fault in Our Stars. My doctor approached me with this after getting a request from the film production company. Shai wanted to talk to someone who is/was a chronic oxygen user so she could adequately portray her character. The crazy thing is that the book is written by an Indianapolis author and is set in Indianapolis and I'm from Indianapolis and I read the book last year thanks to my good friend Neelu. What's even crazier is that I met two people on the crew at a Galactic show the Sunday before "the call". They are part of our Jamcruise extended family in Pittsburgh. Our JC friend Melissa was also at that show. On her birthday Tuesday I gave her the book. At the end of the night she said she would send out some Italian juju that I would get new lungs. And WHAMO the next day I get the call. Random coincidence I think not. When my doctor started asking me about helping I looked at him and said "is this for The Fault in Our Stars"? He grinned as I told him of all the weird convergences. Shai was really cool and mature. She invited us to come to the set and I plan to take her up on it soon.

After a busy Saturday today was mostly R&R. We did have a nice visit from Melissa, Lew, and Sharon Resnick though. I managed to do two dog walks with Randy, Rocky and Rosie as well.

Every day I wake up and feel better than the next. I'm working on expanding the lungs and am almost to the top of my incentive spirometer. My routine includes IV Meropenem 3x day, inhaled Xopenex 2x day, inhaled 3% saline 2x day, and inhaled Colisitin 2x day. I also do the incentive spirometer about 7x day and the Accapella 4x day. Of course there are tons of pills, glucose tests, taking temp etc to deal with. Right now taking care of myself is a full time job.

I'm so happy about how things are going. For fun I tried running about 20 feet just to see if I could do it. My legs felt it more than my lungs and I was not that short of breath. SO AMAZING!!! Cross #1 off my post-tx to do list

Thanks to all for the love and support. Thanks even more to my donor and his family. Please donate: www.organdonor.gov and/or www.donatelife.net

Peace,

Steph

Jam Cruise Theme Night: Purple Power Night

Submitted by Stephanie on Wed, 09/04/2013 - 9:25pm

Purple Night on Jam Cruise 12 will be a Royal Funk Affair. Purple represents fantasy,

mystery, and imagination, but this year purple takes on a whole new meaning as we celebrate life (and lifers). This year we wear purple, the color of Cystic Fibrosis Awareness, for one of our own - Stephanie Rath. Stephanie, a Jam Cruise lifer who has been bravely combatting this disease, has recently undergone a successful double lung transplant . So break out your purple capes, high heels, sparkles, dresses and suits... Let's purple-fy Jam Cruise 12 and celebrate this life we love!

Thanks to all my Jam Cruise friends for making this happen. I love you guys!!!

My Message to Jam Cruise/Cloud 9

Dear Jam Cruise/Cloud 9. Thank you so much for choosing the color purple for Cystic Fibrosis Awareness. It is a challenging disease that has made my ability to rock out a little less than others over the last nine cruises. However my recent lung transplant will enable me to soar and finally show that pigs really can fly. I'm forever grateful for your support and that of the "jamily".

I've received over 100 cards, packages, etc and the majority are from Jamcruisers or friends I've met through Jamcruisers. Thank you so much for creating such a magical community.

Much Love,

Steph and Randy Rath
 

Michael Franti's Personal Message to Stephanie, REALLY!

Submitted by Stephanie on Wed, 09/04/2013 - 9:20pm

My dear friends Anna Owsley and Jessalyn Leean Oxford saw Michael Franti on Labor Day. They were invited onto his tour bus. Michael was gracious enough to send this personal video message to me. It made me smile so big and cry tears of joy.

Peace, Steph

Medical update

Submitted by Stephanie on Sun, 09/08/2013 - 6:30pm

When you get discharged from the hospital you would think there would be tons of time to relax. Immediately post transplant this really isn't the case. Here's a quick summary of what my day is like:

7:30 shower

8:00 IV antibiotics, inhaled Xopenex (dialates airways), inhaled 3% saline (lube the lungs to thin secretions), inhaled Colistin antibiotic, take temperature, do breathing exercise, eat breakfast

10:00 take oral meds

12:00 noon oral meds, lunch, inhaled Xopenex, breathing exercises

Mid afternoon - long walk with the dogs, nap if needed, errands, etc

4:00 IV antibiotics, inhaled Xopenex, breathing exercises

6:00 oral meds

7:00 dinner

9:00 inhaled Xopenex, inhaled 3% saline, inhaled Colistin antibiotic, take temperature, do breathing exercises

10:00 oral meds

11:00 IV antibiotics

11:30 bed sweet bed

While it's a lot to manage, the treatments will decrease and go away eventually. Thankfully I stop IV antibiotics and get the PIC catheter out of my arm Monday/Tuesday.

I saw my transplant doc Dr. Pilewski on Thursday. My Prograf (anti-rejection med) level was high (18 and it should be 10-12). So he decreased my dose and we will retest it Monday. I am culturing a light amount of Pseudomonas (somewhat resistant to antibiotics bacteria) that I had in my upper airways. Thankfully Dr. P is the antibiotic guru and he has me on a cocktail of antibiotics to try to eradicate it. The swelling in my ankles is gone so I can stop taking Lasix. My hemoglobin level had been low but now it is within the normal range.

Dr. P says I'm doing exceptionally well. My FEV1 (how much air I can blow out in one second) is 88% which is phenomenal for someone only three weeks post-tx. Seeing that number really blew me away. For the last 21 years I've been living with an FEV1 of around 39%. For some time before transplant it was around 26%. So basically the transplant more than tripled my FEV1. AMAZING!!!

We talked about when I can return home. I have my two month post-tx bronchoscopy on Oct 11. If all goes well then I should be able to go home a week later. So it looks like we will make it home for some very important birthdays for Anna and Heather....YAY!!!

Friday I met with my transplant coordinator Leslie and the surgeons. Leslie is so cool and we instantly have hit it off. We talked a lot about post-tx life, meds, etc. She's very cool and really emphasizes that you should try to live as normal a life as possible. Dr. D'Cuhna saw me and said my X-ray looked fabulous. He was very very pleased. My incisions looked good and he let Leslie take out my staples and sutures. It feels really great to have them out.

 

I think that's it for now. We are off to see the Michael Franti show tonight. He sent me a video message so it makes good sense to see him here while we can. I'll dance if I'm up to it and sit when I need to.

Love, Steph

 

"When Pigs Have Wings" Party at Burning Man 2013

Submitted by Stephanie on Mon, 09/09/2013 - 9:05pm

Burning Man 2013 - Celebrating Steph's Double Lung Transplant

The "When Pigs Have Wings" party at Burning Man 2013 in honor of the original Pink Pig on the Playa Stephanie Devine Rath! — at Black Rock City, NV.

 

 Bumps in the Road

Submitted by Stephanie on Mon, 09/23/2013 - 7:36pm

Mostly these days I feel like I'm kicking butt and taking names. Walked two miles a couple of times his week plus did three sessions of pulmonary rehab and other fun activities. Except for sometimes struggling with sleep I'm feeling really good.

I saw Dr. Pilewski (my transplant doc) on Thursday. Before the appointment they did a pulmonary function test. My FEV1 (forced expiratory volume in the first second of rapid exhalation) was down just a hair from 88 to 83. My FVC (vital lung capacity during forced exhalation) was up considerably from 73 to 82 which is great. However, my FEF decreased from 141 to 58. FEF is a measure of your small airways and could indicate that you have some sort of small airway obstructive process.

Dr. P is concerned with this drop in FEF and that is might be an indicator of rejection or stenosis (narrowing) in small airways. Because this was only my second pulmonary function test it also could just be a fluke or a bad day. So this Monday morning at 11 I'm having another pulmonary function test. If my FEF is still low Dr. P may do a CT scan of my lungs and possibly do a bronchoscopy early in the week.

If my small airways have obstruction/narrowing they can balloon them open during the

bronchoscopy and even put in temporary stents if needed. If it is rejection then they will give me high doses of solumedrol most likely. This will suppress my immune system big time and should stop the rejection. I'm guessing I would have to check back in to the hospital if it is rejection.

Hearing the word rejection is a kinda scary thing when you are a newly transplanted. Rejection means that your body has figured out the lungs are foreign and so it gets pretty ticked off that an outsider is inside and sends your immune system to attack. I REALLY like these new lungs and want them to last as long as possible. So I'm a little stressed about things to be honest. That being said, rejection is VERY common in the first six months post transplant. So I'm trying not to worry and know that I'm in great hands here at UPMC. Dr. Pilewski is the bomb and I trust him completely.

So I'm going to try to get some more sleep and hope that all goes well today. The fear of the

unknown is much worse than dealing with whatever may come. I'm sure things will be fine and am just ready to get the ball rolling. I will keep you updated as things progress.

  

The Scoop

Submitted by Stephanie on Wed, 09/25/2013 - 8:33pm

Well here's the scoop kids. Had my pulmonary function test Monday. My FEF (small airway

measurement) is still in the 50s. Also my FEV1 decreased from 83% to 74%. My FVC dropped from 82% to 72%. So there is concern that something is up.

The good news is we have a plan. Dr. Pilewski is having me do a CT scan of my lungs tomorrow at 7:30am (yikes early). Then I will have a bronchoscopy at 12:30 on Thursday. They will take tissue samples looking for rejection during the bronch and also culture my sputum/mucus and see what bacteria are growing if any. The rejection pathology report may be back as early as Friday. The sputum culture will take several days. Of course if there is stenosis/narrowing of the airways they will know that during the bronch and resolve it.

I was more short of breath in the shower this morning and it made me remember a little bit of how I felt pre transplant. But then I went to pulmonary rehab and felt great during my workout. Thank you endorphins!!!

My attitude is now adjusted and I'm once again ready for this new mini-challenge!!!

Thanks for all the love, prayers, light, positive vibes, insight, funny comments etc.

Peace and love,

Steph

 

CT Scan & Bronchoscopy

Submitted by Stephanie on Fri, 09/27/2013 - 6:00am

I had my CT scan yesterday and my bronchoscopy today around 1:30. Per Matt (bronch doctor) my airways were open and clear of mucus. Better yet there was no obvious sign of infection. There was also no stenosis/narrowing of the airways. This is great as there was no need to balloon or stent them.

While I was waiting to go into the procedure room I was in the holding area. My medical chart was on my bed so I looked inside and got to read my CT scan report. This was great because it hadn't been officially released or relayed to me yet (sssshhh). It showed I had some mild central bronchiectasis (with no air trapping on exhalation) in my lungs suggestive of rejection. The good news is it is shown as mild. I'm hoping they should be able to treat the rejection with high dose IV steroids to dampen my immune system. They took tissue samples during the bronch to look for rejection. Those results should be available in 24 to 48 hours, then hopefully we will start treatment early next week. I hope to know more tomorrow.

For now I'm doing lots of research and have lots of questions. Keep in mind that about 95% of lung transplant patients have rejection and mostly it happens in the first six months. I've got great doctors here so I'm in good hands!

 

We Have a Gameplan!

Submitted by Stephanie on Sat, 09/28/2013 - 5:00pm

I talked to my post transplant coordinator on Friday afternoon. The biopsy results from my

bronchoscopy are in. I have some mild reversible rejection. Note the words MILD and
REVERSIBLE!!! I'm so excited that it is mild. If I was further out from my surgery they might have just given my a boost and taper of oral prednisone. However, Dr. Pilewski is going to be aggressive/safe and hit it hard with high dose IV steroids early next week. I should be on the high doses for three days. During that time I may be up late, obsessing over silly things and generally acting like I'm a bit manic. The upside is I will probably get tons accomplished including things that don't even need to be. The downside is that the tapering off the high doses can make you a little blue and feeling like you just got electrocuted and hit by a train all at the same time. I also expect to put on a few pounds as your appetite is voracious. But hey you gotta do what you gotta do right???

The steroids will suppress my immune system BIG time and it would cause a flare up of an active infection. So I won't start the steroids until my sputum cultures come back. That way my doctor will know if I also have any active infection in my lungs. If I do they will give me antibiotics at the same time. The sputum culture probably won't be back until Monday at the earliest. So I should start treatment early next week. The plan is to do the treatments via homecare instead of getting admitted. I'd much rather be at home (aka our Pitt apartment) with good food, quality snuggling, and no 4am vital signs.

Now that I know what's up I feel a HUGE sense of relief. I trust my doctor completely and am lucky to have his help. I'm SO glad to have a gameplan to get past this little speed bump. After this I'm back to a more active life and getting to experience all that I can. :)

Peace & Love

Steph

P.S. My wonderful friends in the Pink Pig Posse proudly present an ONLINE SILENT AUCTION in support of the COTA for Steph R. campaign!!

PLEASE CLICK "JOIN" on this event page so we can easily update you with news and

developments about the auction...and SHARE this event with your friends!

ONLINE SILENT AUCTION - COTA for Steph R:

https://www.facebook.com/events/519331258147471/?ref_dashboard_filter=calendar

The main event starts Sunday at 8:00 PM ET when we will have dozens of items for your bidding pleasure. We will be auctioning off VIP tickets to Hulaween, dinner and a show at the Hot Spot, Indy 500 tickets, art work, jewelry, gift certificates to restaurants, gourmet food, and much much more! We will also be auctioning off Jam Cruise specific items, like a private happy hour with Nigel Hall and a percussion lesson from Mike Dillon!

 

 eBay Silent Auction

Submitted by Stephanie on Thu, 10/03/2013 - 3:13pm

Team COTA for Steph R is THRILLED to announce that the Online Silent Auction in honor of Stephanie is now LIVE! You can check out the amazing items you can bid on by going to eBay and searching for "COTA for Steph R." or by visiting this Showroom on Facebook! Check it out and BID GENEROUSLY!!

https://www.facebook.com/pages/Silent-Auction-Showroom-COTA-for-Steph-R/1449742365251782

 

 

Doctor, Doctor, give me the news...

Submitted by Stephanie on Sun, 10/13/2013 - 10:39pm

On Thursday I had an appointment with my transplant physician Dr. Pilewski. All in all it was a GREAT visit!!! My pulmonary function tests that measure my lung volumes were UP which probably means the Solumedrol (high dose IV steroids) I did for the rejection worked. Thankfully the rejection I had was mild and considered reversible. However being on 750mg of Solumedrol for three days takes its toll.

Steroids are really hard on your muscles and joints. My legs have been really weak and I feel like I'm starting all over again building muscle mass. Also, there have been a few mornings that I've woken up feeling like there are knitting needles stuck in my knee joints. Thankfully I'm able to take a low dose pain killer which helps.

I've also been having increased acid reflux because of the treatment. This is a concern because if you reflux stomach acid into your new lungs it can cause chronic rejection which can eventually cause the lungs to fail. To prevent this I sleep on a 30 degree angle. A foam bed wedge is my current way of making this possible, but it's not a great fix. I find that I slide down a lot. It looks like there is an adjustable bed in my future. The good news is they make ones that don't look like hospital beds.

I'm also burping up these nasty rotten popcorn tasting burps. After doing a little Google research I thought it might be due to some bacterial growth in my intestines. Of course my theory is based on forum posts, misc sites, etc. It could also be related to the reflux and/or steroids. Dr. Pilewski is putting me on Doxycycline just in case.

The most annoying part of all this is my sense of taste is WAY off. I'm a bit of a foodie and love a good meal. Right now though everything tastes somewhat metallic and sweet in a weird way. I have to salt the heck out of anything to even notice. I've learned from others post transplant that most likely this will go away after a few months.

My Prograf levels have been high so my dose just got decreased from 4.5mg 2x/day to 3.5mg 2x/day. I'm hoping this sticks as the Prograf makes my hands shake enough that I can't take a picture with my iPhone. My handwriting has always been bad but now it's almost illegible. So glad for typing!

OK. I did say earlier it was a great visit right? So, let's get back to the good stuff! The next step is to have a bronchoscopy this Tuesday at 12:30pm. They will take very small tissue samples of my lungs to check for rejection and take a sputum sample to test for infection. IF the rejection samples show no rejection then....I GET TO GO HOME!!!!!!!!!!!!!!!!!! It usually takes 24-48 hours to get the results so we are hoping to be packed up and on the road Friday AM. Like anything in transplant recovery nothing is 100% certain but I'm feeling good about it.

As excited as we are to get home it will be a little bittersweet. We have met so many great friends here and have had so much fun with them. The good news is we will be back every two months at least so it's not goodbye for long. LOVE YOU GUYS!!!

 

Saturday 10/19/13: Donation Yoga Class for COTA in honor of

Stephanie Rath Hosted by Tobie Hall

Submitted by Stephanie on Tue, 10/15/2013 - 8:12pm

This is a donation yoga class in honor of Stephanie Devine Rath who had a life saving double lung transplant a month ago due to complications from Cystic Fibrosis. Let's help give her some peace of mind. Bring a mat and your moola!!!!! Lisa Riolo is the guest instructor. Spread the word!

Facebook link to the event: https://www.facebook.com/events/1404000886495793/?

ref_dashboard_filter=upcoming

When: Saturday October 19 2:30 pm

Where: The Riviera Club www.rivi.org
Address: 5640 N Illinois St, Indianapolis, IN 46208
Phone: (317) 255-5471
Directions: http://mapq.st/1fyXie4
Why: This is part of a larger fundraising effort to support Stephanie. An estimated $65,000 is being raised by a team of her friends and colleagues. They are working with the Children’s Transplant Association (COTA) in honor of Stephanie to raise these funds. COTA is a national charity dedicated to helping children and young adults who need a life-saving transplant by providing fundraising assistance and family support.

Stephanie was diagnosed with Cystic Fibrosis at the age of 19 and in the 20+ years since her lungs gradually declined to the point where she needed to be on oxygen full time and a double lung transplant became a necessity for her ongoing survival.

Stephanie's surgery went extremely well and she has been living life to the fullest and making the most of every moment. Her incredibly buoyant and optimistic spirit touches and inspires everyone around her. Throughout her CF journey, she has become affectionately known by friends and family as the “Pink Pig” because of her strong identification with the phrase, “If Pigs Have Wings, Away They’d Fly”. Here’s Stephanie in her own words describing what her fascination with flying pigs is all about:

“The flying pig has become a symbol for me of overcoming the impossible. I hope that my

journey will show others living with life-threatening diseases that they too can try to overcome what seems to be impossible.

On August 15th, my wings finally came be in the form of a double lung transplant. My dream

has become a reality and I've even run and skipped a few steps of joyous celebration.
There are bumps along the road with a lung transplant. However, overall I feel like I've been
given an entirely new life. I'm determined to enjoy it as much as possible and honor the gift
given by my donor and his family. My life is a daily celebration of renewal, gratitude, and
happiness. Now this pig can fly!!!"

If you can't attend the class, please take a moment to visit the COTA page at cotaforstephr.com and make a donation if you are able, No amount is too small. Every little bit helps!

Also, please help us spread the word about Stephanie's story by sharing this email with your family and friends!

About COTA:

COTA is a national charity dedicated to helping children and young adults who need a life-saving transplant by providing fundraising assistance and family support. Over the past two decades, COTA has assisted more than 1,900 patients from throughout the country, all of whom required a life-saving organ, bone marrow, cord blood or stem cell transplant.

Our community fundraising campaign leadership has been truly impressed with the fact that every dollar we raise will go toward transplant-related expenses. For more information, please visit cota.org.

 

The Long Road Home

Submitted by Stephanie on Tue, 10/29/2013 - 10:13pm

Well we have officially been home just over a week. Let me clarify. Technically we are not home. We are in Indy but are staying at my mom's house. During our stay in Pittsburgh we had our septic system back up and flood the bathrooms and some of the surrounding areas. The worst part is that mold grew during this process and now we are dealing with both water damage and mold remediation. Note that mold and being post transplant are not a good combination. So we are being extra cautious on getting the job done right. Both bathrooms, part of one bedroom, and a little bit of the great room floors are trashed. Also drywall in some parts needs replaced. This is when you are thankful you have insurance that will cover not all but a decent chunk of it.

So lately things have been just a little crazy with Randy & I and the pups Rocky & Rosie. We are living out of various boxes, bags and suitcases. Randy is washing every stitch of clothing, etc we have. I am helping to dry and fold so that helps at least. Randy has been inside the house and takes video so I can see how things are coming along. We hope to get back home in the next week (crosses fingers).

I'm trying to see things on the bright side by thinking of this as a new beginning. New lungs,

renovated and cleaned up house, new life. Major transitions like this are not easy but in the end it will all be alright. It always is.

On the health side of things I'm doing OK. I'm back on antibiotics for some lingering Pseudomonas in my lungs. Dr. Pilewski already figured I'd be on and off antibiotics for several months post transplant so this is no big surprise. My strength is coming back slowly. The solumedrol I took for rejection really wasted my muscles especially my legs. Crouching down and getting back up is not possible without using my arms. This can be quite comical at times.

Even though this transition is rough I'm glad to be here making it. Whenever I think about being post transplant and having issues (medical and non-medical) pop up, I keep reminding myself that it beats "Plan B". Plan B is me being sick, hoping not to die, and not being able to enjoy all that I can today. And with all my wonderful family, friends and good times ahead I'm really lucky to have so much to live for.

Keep on living the dream!!!

Steph

 

Writer's Block

Submitted by Stephanie on Wed, 02/26/2014 - 8:35pm

It's been quite a while since my last update. I've thought about writing countless times, but for some reason it's not happened. The truth is life has been happening and at quite a hectic pace.

Lately I've been preoccupied with medical issues, home reconstruction, and trying to squeeze in some time for fun.

Over the past few months I've dealt with a cancer scare, anemia, and sinus issues. At my oncology check-up my CEA level (a blood marker that indicates cancer) was high. My doctor said it was most likely a false positive but wanted to do a PET scan to be sure. The days between my appointment and the PET were LONG!!! In the back of my mind, I was sure that it would be a real injustice for me to have cancer again so soon after transplant. Not long after the scan my nurse practitioner called with the good news...CANCER FREE!!! What a relief.

I've also been extremely anemic and have had low IGG antibody levels. IGG levels have been increased by giving me periodic IVIG infusions. IGG antibodies are part of your natural immunity and help ward off viral and bacterial infections. The anemia has been corrected via two blood transfusions and a month of Aranesp injections to help my body produce red blood cells. My hematologist has been running various tests, including a not so fun colonoscopy, to find the cause.

So far the only answer has been "It must be the anti-rejection meds." It seems like when there is any weird issue post transplant the stock answer is it must be the meds. Of course I tend to use that one too if I'm feeling fussy and haven't been my usual self.

My sinuses have been running like a faucet. It could be "the meds" causing me sinus problems. It could also be allergies possibly caused by the construction going on in the house. Dr. Pilewski wants me to try Allegra and if that doesn't help then a CT scan of my sinuses will be done to see if sinus surgery might be needed. I'm hoping not because it is a painful recovery post-op.

The house is still a crazy mess but progress is being made. The guest bath should be done soon and we will finally have a working shower in the house. YAY :) For the past few months we've been showering at my mom's and using our kitchen sink to brush our teeth. The good news is we do have a working toilet. The even better news is we have grown accustomed to being dirtier than usual. Now we just have to do the master bath, two bedrooms, and the great room. Thank goodness insurance is covering some of this!

Even though home life has been adventurous, it has not stopped us from having adventures away from home. In November we went to my Uncle Joe's lake house for Thanksgiving. It was so great to see some of the family that hasn't seen me with new lungs. We spent Christmas in Chicago with Randy's family. Randy just had hand surgery. His father had injured his back, and his mother was dealing with a small breast tumor. For the first time ever I was the healthiest of the bunch.

Jam Cruise was our next trip at the beginning of January. This was our tenth time to sail on this magical music cruise. Every year we see so many great friends and meet many more. This year was extra special. One of the costume theme nights was the color purple in honor of me and cystic fibrosis awareness. It was so amazing to see everyone dressed in various interpretations of purple all in support of the cause and me. So many people came up and hugged me and told me how much of an inspiration I am. I felt very humbled and thankful.

Speaking of thanks, I want to give thanks to all of you that have supported me both financially and emotionally. Our on-line auction to raise funds was a huge success and we have met our goal for COTA fundraising to help defray some of my transplant expenses. Your help has made this whole transplant journey so much easier and I'm forever grateful.

I owe the deepest gratitude to my donor and his loved ones. Without him my life may have been over by now. Every day I try to celebrate his life by living life to the fullest. I'm training for the minimarathon and just walked seven miles yesterday on the beach with Randy and our dogs Rocky and Rosie. We were camping on Galveston Island in Texas. The next stop is to visit a friend in New Orleans for Mardi Gras. Every day I get to experience new and wonderful things with energy levels I've not known in decades. I truly am living the dream.

Thanks to all!

Love,
Steph