December 31, 2009

Contest Winner

I never announced who won the contest I posted HERE.
It was my dad!  He guessed November 30th-  only two weeks off!  Now I get to take him to lunch!

Positive Thinking

I have had one of the fastest recoveries of a double lung transplant that I know of.  When we went  to check out my old lungs, one of the lab technicians (I don't know his official title, haha) asked me how long it had been since my surgery.  "15 days post,"  I replied.  His jaw dropped wide open, and stayed there for like a minute.  I was thrilled to know that he obviously thought I was doing very well, and he probably comes across transplant patients a lot.  (Or at least more than I do anyway.)

Over the last few weeks I hear people say "she must have the right attitude" or "she must have a strong will to live" or "her positive attitude played a big part of it" etc.

I do love life.  I love my family.  I love my son.  I love colors, and smells and weather.  I love to be out doing things, and I love to stay active....

That being said...

While it would feel nice to stand here and take credit for a fast, smooth transplant recovery due to my "grit and determination"  I stand here to say the opposite.  It is by the grace of God that I'm here.

For a long time I have been praying that God do His will in my life.... no matter what that may be.  Whether I end up having a super hard life,  a super easy life, a miraculous life, or He takes me home - I'm okay with that.   When I was really sick two months before transplant, I thought that I was going to die - and I was okay with that.  My main reason to live is for God.  I've read the book- I know how it's gonna end.  I know that in the long run there is always victory.

Without God I would be nothing.  The only reason I can walk across a street, I believe, is because He is "holding me up" in a sense and allowing me to live.  I personally do not believe that my attitude positive or not has anything to do with my health, living longer etc.
Granted,  God does allow us freedom to chose any path, and make all decisions in this life.  If I were to take a bottle of whiskey, go sit in an alley and forsake all my transplant medications, I am sure I would be dead in a few days....

But the reason that I am not destructive, the reason why I do want to live is because that is what God wants.  Sticking close to Him, I know that. Jesus says in John 10:10

The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.

God is the ultimate giver of life.  He has blessed me with eternal life.....

So yeah,  having gone through end stage Cystic Fibrosis I have been told to "think positive" or "stay positive"  more times than you would imagine.  People see someone who is hurting, and they don't know  much else what to say.  Our culture is filled with this positive thought movement.

I do not believe in positive thinking.  I do not believe if I have a positive attitude it will get my anywhere regarding health, business, psychology or sports.  That may come off as sounding negative but let me explain.

Again, my goal in life is to live the way God wants me to.  (Let's not talk about how often I fall short of that goal!)  The bible says in Philippians 4:8

Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things.

If I come off as having a positive attitude, it's because I am meditating on all of the good things God has done in my life.  I do not think positive for the sake of thinking positive.  I treasure being "real"  I treasure rejoicing with those who rejoice, and weeping with those who weep.
I have met "positive thinkers"and I have met "negative thinkers" and have met people who are just "real".
I prefer the latter.

Yet I will rejoice in the LORD, I will joy in the God of my salvation. Habakkuk 3:18

I have accepted Jesus in my life, and I have salvation through Him, I always have a reason to be hopeful and filled with peace and true joy.

December 30, 2009

Cytomegalovirus Immune Globulin Intravenous (Human)

It's been a long day... Today we went over to the hospital for a 3.5 hour dose of Cytogam. It is one of the anti-infection drugs immuno-compromised folks like Leah need to take. It reminded me of dialysis for cancer patients - a room where people go to get infusions of whatever meds they need on an outpatient basis. Leah was loaded up with Benadryl the whole time so she was pretty sleepy.

Last night Leah didn't really get any rest. The drugs are keeping her from falling asleep (not the Benadryl - maybe the Prednisone...). We hope to get some better rest tonight.

Until next time,
seth...

December 28, 2009

My Old Lungs

Today we got the opportunity to come back to the hospital to look at my old lungs. They have been washed and preserved in a formaldehyde type solution. It was pretty strange. We were taken into the surgery pathology room, which was filled with different people's body parts.

Creepy.






My old lungs were in pretty bad shape (obviously) The lab technician explained the details to us. My bronchial tubes were enlarged and filled with puss and mucus. They showed signs of lots of infection. I was also surprised to learn that because I live in an urban area that there was a thin layer of "black" because of pollution. In fact everyone who lives in a city has that. Crazy.

It was pretty gross because the room had a strong odor. We didn't know if it was because of the preservatives or just because it was filled with organs. Holding the lungs felt like holding a piece of meat from the grocery store.

Later that day I came back home and started shredding cooked chicken breasts to make enchiladas. Seth and I started to get creeped out because it was so similar to my old lungs - haha.

It was a really cool experience. We took lots of photos, and got to say "goodbye" to my old Cystic Fibrosis lungs.

December 27, 2009

Two Weeks On

It's been two weeks now since I got the call! I can't believe how much has transpired in the last 14 days. I am continuing to recover well. Thank you so much for continuing to keep us in your prayers. Here are some more detailed prayer requests....

-Please pray that my lungs continue to stay clear. Clear of dust, mold, fungus, germs, viruses, bacteria, mucus and all the nasty stuff that could float in there and cause damage to my lungs. Please pray for wisdom for me to know in which situations I should or should not wear a respirator or a paper mask, or nothing at all.

-Please keep in prayer that my body would be able to regulate my temperature well. Although I don't think I have gotten any fevers, I keep getting extremely, uncomfortably hot and sweaty - especially at night. It's the middle of winter and I always want the sliding glass door open. Pray for Seth too.... that he doesn't freeze to death, haha.

- I'm still hooked up to I.V.s for the next couple of weeks. I am on very high doses of antibiotics to prevent the risk of infection. While I.V.s are something that I am used to, having CF and all, they are never fun. Please pray for patience as we finish this course up. Anyone who knows me, knows how much I like to shower everyday, and every time I am on home I.V.s I can only really get one good shower in a week (between needle changes) Please pray for me not to feel too yucky.

-Last week my vein on my left forearm got infiltrated, meaning it burst. It has been a very painful event for me. My arm is purple and bruised. I am not allowed to stop the I.V. therapy even though it continues to aggravate my veins, because of the importance of the antibiotics. I have been wrapping it daily in ACE bandages and using hot packs. Please pray that it will continue to heal properly. My fingers and wrist have seemed numb ever since it happened, and I get anxious that there is permanent damage. Please pray this is not the case.

- I am on so many brand new medications. I'm not sure how many ( I should really count them) somewhere around 15. With this comes new side effects. Prednisone is known to mess with your sleep, appetite, and your moods. Please pray that the side effects will be at a minimum and that I'll be able to sleep and won't get moody.

- Please pray for no rejection. At any moment my body could decide to just up and reject these new lungs. The human body recognizes transplanted organs as "foreign" and naturally wants to attack them. Hence all those new "anti-rejection" medications I am now on, and will be on for the rest of my life. Please pray that my body would accept the lungs and not reject them.

-Although our "hometel" is cozy, and we are blessed to be here, please pray that we will be able to return to our real home, soon and healthy. We get to see Levi often, but it is not quite the same as just living together at home as a family. Please pray for Seth, Me and Levi to not miss each other too much the hours we are not able to spend together.

December 26, 2009

Lovely

Today I got to walk through a field hand in hand with Seth as fast as I wanted to....

Went out to the yummiest seafood dinner....

Talked to one of my very best friends on the phone....

Rented a movie and just cuddled in a recliner....

Got to visit with Rebecca and Kyle and open even more Christmas presents....

Got to make a neighbor house call and meet the Ormans....

Praise God for the wonderful life He has given me....

December 25, 2009

Merry Christmas

video

December 23, 2009

Waiting... Hmmm...

Please pray that we can leave the hospital today.  Last minute details, insurance, bureaucracy, circumstances, etc. threaten to keep us here another day for no important reason...  It is in God's hands.  

 

When you are a patient or a caregiver it is your job to be the "squeaky wheel that gets the grease."  Needless to say, I have been "squeaking" a lot lately...  You cannot blindly trust everything the doctors and nurses tell you, give you and plan for you.  They are simply people (like you and me) who put things off to the last second, get tired and make mistakes, and don't care about you as much as you do...


That being said, I have to say that almost everyone here in the step-down unit has been very good and we are very appreciative for the great job they have been doing.

 

December 22, 2009

One More Hurdle


The "hometel" apartments are pretty nice.  I got to go over there and check it out today.  Pretty much just a furnished one bedroom apartment.  I had brought our presents from home and put them under a little tree in there.

Today should have been easy for Leah, but one of the sutures/stitches around where one of the chest tubes had been was just way too tight.  Poor Leah has been in too much pain for about half the day.  Finally we have gotten some proper attention (a doctor...) on this situation and we are going to numb it up locally, remove the suture and replace the stitch with steri-strips and give her extra pain meds... (Which just happens to be exactly what I recommended...heheh.)  Thank God Leah is finally getting relief from this random but intense pain.

Tubes!

Leah is being prepped for the removal of her final two chest drain tubes! 
"I can't wait..." she says.
The removal process is painful - they just get un-taped and pulled out, but like a bandage being ripped off it hurts for a moment and then... you're free!
We are still waiting for the pain meds to come - oh wait  - they're here.

Lord willing we should be moving out to the temporary apartments tomorrow or maybe the next day.  I am officially renting it as of today...

December 21, 2009

Update and Some Thoughts


We are looking at possibly going to the temporary apartments... sometime? Well a good guess would be sometime this week. Leah's chest tubes are draining less and less which is a good thing. Those should come out soon and then we should be able to move.

We got to chat with Rodger today. (Remember, his wife Holly got the heart transplant at the same time as Leah, from the same donor.) Holly should be coming to the step down unit as soon as they get a room/bed ready for her. She has been in the ICU this whole week. We are looking forward to finally meeting her!

Leah and I have really been able to see God's hand in so many instances and circumstances. We are reminded that our God is fully in control of our lives, no matter what!
"
For to me, to live is Christ and to die is gain." - Philippians 1:21

Again, Thank You to the Donor and her Family for choosing to share life with us! You guys are in our prayers.

One of our new things to deal with is blood-sugar and insulin and diabetes (but it's fun to say "diabetis"... just kidding.) This is brought on as a side effect of the transplant meds, i.e. the steroid prednisone. This is something we will have to keep an eye on and figure out. Not sure how much this is going to be a part of our lives as we go down the road, but we'll see. We recommend a lancet from home instead of the hospital one - theirs produces a small puncture wound versus a small poke. The Accu-Chek lancet seems to work good... and it turns out that the hospital does have them available, but we had to ask. (That's a bit of advice to those following this blog who are looking to be going through any of this some day... oh and the best bagel place I've found around here so far is Izzy's...)

One Week Post TX

One week post transplant! A week ago right now I was being wheeled out of surgery! Today I got to see Levi for the first time! Kids are not normally allowed but Levi got a special badge that said he could come. We got to go on a nice walk on the roof of the hospital.


Also all the Respiratory Therapists and Nurses of Unit C3 gave me a card they all signed and some chocolate covered macadamia nuts to congratulate me on my new lungs! Yummy! Thanks to Druce and all the Stanford Staff for that - it made me feel so special.


December 20, 2009

A Lazy Sunday Afternoon

The PayPal button was not working for a while at first. It should be fixed now. And a Huge Thank You to all you guys for your prayers, love and support! Seriously! Some of you out there say you can't wait to log on and see the updates here; we can't wait to log on and see your comments!

We are looking forward to seeing Levi today! We got special permission for him to come to our room, "As long as he's not sick." Leah has not seen him in a week!

And yes, it has been a week today since we got the call and rushed up to Stanford!

Seth





December 19, 2009


These are some of the meds Leah is taking "Post-Transplant" She and Seth are learning their names, dosages and purpose
.


Today has been a good day.

It really has. Everyday I just feel more blessed and lucky to be alive. Things are continuing to go well. I have been cruising around the hospital halls. I was walking at a pretty fast pace, for quite a long while on no oxygen- it was awesome. Today we went up top the roof of the hospital to a secret garden and and walked around. Fresh air for the first time in almost a week... it was really refreshing. Of course the days are filled with good times and extremely hard times. I know the pain and discomfort I'm going thorough is temporary though, and so bubbling inside me I just keep having a feeling of glee.

It's like looking at the world again with a fresh set of eyes. The possibilities seem endless. Before while I was waiting on the list I was staring at death right at in the face. Not just any death- my death. It was not fun, or easy. It was very real and very difficult. I was not so much scared of death as I was of dying... because the dying part was painful. People I find tend to gloss over the subject.... no one wants to dwell on it. It is very real, but it is the elephant in the room. I would find myself wanting to talk about dying. Not because I was depressed, not because I was weird, it's just what I was facing at the time. Now that I have come through transplant and am feeling my body getting stronger I am glad to not have to be thinking about dying. My body is not constantly reminding me of my mortality. We are all going to die someway, somehow, but it is nice to be able to think of other things without wondering how many weeks I have left here on this earth. I know where I am going after I die, and have always had peace about that, but dying is something I no longer have to face on a daily basis.

Even though the healing is going well, there are a few small bumps in the road I'm working through... most of which are not blog mentionable.
I discovered some air pockets under my skin during the night around my neck. It's called Crepitus. It's a small complication among a few others that will hopefully be resolved soon. My body is just kinda still freaking out about having a major surgery less than a week ago, and hopefully just time will resolve all the issues and discomforts I have to go through before I am feeling great.

Things are returning to a more normal state and calming down. This hospitalization is starting to feel like other hospitalizations. We are waiting for things to get finished and come together so we can be released from the step down unit into our "hometel" across the street. We'll be living there at those Stanford apartments for several weeks before we are allowed to go to our "real home" in Santa Cruz. If you are feeling healthy and not sick, stop by for a visit when we are in our "hometel". It will be nice to be normal again, and we love to have visitors. It will also be nice to have Levi around more because right now he is not allowed in this ward of the hospital. We miss the little guy of course, and it will feel great to be all together for Christmas.

Takin' Donations

Here is the link for those of you who have expressed a desire or considered helping and being a part in this incredible journey. Like I said before, there are many, many transplant related expenses and the team here has encouraged us to fund raise as much as possible to help cover those expenses (including the fact that I won't be at my normal job for several months...) Simply click the Donate button below. Obviously anything is extremely appreciated.

Speaking of appreciation, we can't begin to tell you all how much we appreciate and are blessed by all your wonderful support, comments and prayers. We love it! Keep it coming!

God bless,

Seth





December 18, 2009

Friday


Leah and I (Seth) got to meet in person her fellow transplant friend Lindsay - and Lindsay's sister Rebecca, who was her primary caregiver during the transplant hospitalization, etc. The CF community is an awesome group of people around the world who don't often get to hang out in person but even online give each other a lot of support... Kind of like veterans of a life long war being able to connect in a way no one else can.

Leah has been able to cough up little bits of residue from the surgery. It is slightly different figuring out how to cough effectively with these new lungs.

We are shooting for Monday or Tuesday to get the other two chest tubes out, stop the vancomycin drip (no more Red Man's Syndrome - extreme itching - thanks to prednisone and high doses of benadryl...) and go across the street to the temporary apartments.

It sounds like Levi has been having fun. In the last couple days he has toured a submarine complete with torpidos and ridden a trolley in the city.

For some reason post-transplant people can feel really hot for the first few days. They like their rooms cold and even keep the fan turned on them. This is the first day I
haven't been really cold living in this hospital room.

Awesome job Leah!!

Leah,

I too thank Jesus for providing you with your new lungs in a miraculous and wonderful way. "Every good and perfect gift comes from above" and these lungs are certainly a gift for you.

I also thank the Lord for giving me a front row seat to watch true courage and faith being lived out in your life.
You have been nothing short of heroic in doing your part and I'm so proud of you!
From walking sooner than anyone expected after your surgery to being an "A" student on reciting your "Sternal Precautions" you have been awesome throughout this whole ordeal.

Seth has also been inspiring (and convicting) to me in his selfless care for you day in and day out.
I love him as if he were my own son and I appreciate him more than I can say.

Keep up the good work guys and Lord willing we'll be celebrating Christmas together in your "Homtel"

Love, Father

December 17, 2009

Wow.

Wow. That's all I can say. This has been a crazy week, I can't even explain. I am such a happy girl right now to be sitting here with new lungs. I feel so blessed, and excited and overwhelmed. I am so grateful to all of the people who made this lung transplant possible. I am incredibly thankful to Jesus as well.

Getting the call and going into surgery was such a surreal experience. My family and I sat in anticipation and full of emotions wondering if this was it. If this was a "dry run" and we were just wasting our time, or if this was it- the call that could change my life. Or if this was it- the end of my life. We just didn't know. As we hugged and had teary "goodbyes" and "I'll see you laters" the whole thing was just so intense. Too intense- it almost didn't even feel like it was happening to me at all. As I was wheeled back to the operating room away from my loved ones I was full of emotions. It was scary, exciting, very quick, and very surreal. I don't remember much after that- which I am thankful for.

Waking up in ICU.... I was right to be scared. It was scary. I woke up very, very soon after the surgery was complete... probably sooner than anyone expected. I could not talk, move, communicate or get people's attention. No family was there... it was a very dark night. I was feeling terrible , with a very bad fever. I could hear medical professionals talking around me about my condition but was unable to correct them or add any input. This was very hard for me. As I lay there in a feverish state, hearing the somber, intense tones of what might be going wrong with me, I was positive I was dying. I just hoped I could stay alive long enough to have family come join me so I wouldn't have to be alone.

Sometime later the Dr. did come in and express to me that he thought I was doing well. I was in disbelief, but so relieved. The fever was decreasing and after a turn of events I was able to scrawl a word on a piece of paper, or motion for a swab, to try to soothe my dry, swollen mouth. They did a bronch, which I was awake for and remember everything, but that was okay with me at this point because I was alive and had a fighting chance of surviving.
Seth was not allowed in ICU nearly as much as I had hoped or he was told he could be. It was very hard. As morning rolled around, and sunshine came back into the world, it came back into my world as well. Seth came in and we managed to communicate somehow. I kept using sign language and signing out words to everyone, but quickly learned that I was also the only one with this skill and it was useless. Finally I heard the news that I could be extubated. Even though I probably only waited several hours for this to actually happen... it seemed like a lifetime. They pulled the tube out of my chest, and my swollen tongue just fell out behind it. I still couldn't speak, but was so happy nonetheless. After a quick wave to my Grandma and Grandpa Franks, I moved to a different room and things continued to get better. I had a wonderful daytime nurse (night time seemed like a different story) who helped me recover. He was so thoughtful, caring and greatly entertained me. He even sang.

I had so many wonderful friends who worked at the hospital pop their heads in to say "hi" to me. This meant so much, and I felt so loved. The hospital staff have become friends in many cases, and I loved how they came to encourage me and cheer for me. I have met some truly amazing people here at Stanford, and am so thankful for the love and friendship surrounding me.

So, I was extubated less than 24 hours post TX, and moved out of ICU within two days post TX. Am I blessed or what? My pain has been decently managed, sitting in a chair, up walking around, and tubes are coming off of me left and right. I had three tubes taken out today, and the only things left are just my two chest tubes and my mediport. I could not hope for such a great recovery. Although it is rough and I am still in pain often, it does not overshadow the feeling of just pure glee. I am so stoked at everything right now. I no longer need oxygen or breathing treatments. It is HUGE! My lungs are clearing and healing. I am amazed at this whole process, and it is truly indescribable...

I wish I knew more about the wonderful lady who generously donated her organs to save my (and other's) life. I continue to pray that she knew Jesus, and I pray for her family as well. As I was experiencing rainbows on the drive up to get new lungs, I'm sure her family and friends were filled with sadness and gloom. I pray for peace that passes understanding for them and that they can feel the love of God during this rough time.
I have heard rumors that she was a female, about 5' 2" and 30 years old. I am amazed at the perfect fit and timing of everything. I was truly at the end of my life, and worried that I might not receive the call in time. I am so grateful to her for deciding to be a donor, and in turn saving my life.

When I ponder the gift of life, I just think about how much I want to live up to that gift. Jesus died for me, and in turn I owe him my life and try to live daily to please him. I feel similar about my new lungs, and want to use them to the best of my ability. So watch out everyone, soon I will be running around you all in circles - ready to live and run and breathe!

If things continue to go as well as they have I could be out of the hospital and into the apartments before Christmas! This is the best Christmas gift ever, and I am so thrilled and excited. Sorry to those of you who don't get your presents or cards in time.... I have been a little preoccupied.... but I know you all understand. Please continue to keep us in your prayers and leave comments on the blog. They are all so encouraging! I love you all.

Today has been a good and busy day. Leah got two of the four drainage tubes removed from her chest cavity. I have pictures but I don't want to creep you out. The surgeons who performed the transplant came by and were happy with what they saw. That's Leah's main surgeon, Dr. Beygui in the picture. They said Leah's old lungs had been really full of infection and scarring.

We may be able to leave the hospital and move to the nearby temporary apartments by next Monday! Out of here by Christmas, Lord willing!

Leah has finally gotten an appetite and her swollen tongue did not stop her from eating some Boston Market.

We have been learning about the new medications Leah will be taking. There are a lot of meds to learn but it is going to be a lot less than what we have been taking!

Okay, time for some more physical therapy - going to walk around the unit some more.

December 16, 2009

Food?


All I can say is the pureed steak is in the shape of a steak and it has gravy on it. The pureed carrots... well, you can see... very strange.

My Baby's Gone to Rehab


Yep, day three was a tough and busy one, but it didn't diminish how stoked we all are for Leah's gift of breath. She worked hard today, walking all around the unit. Behind that mask she is supposedly sticking out her tongue! For the next three months Leah is not allowed to move her arms very high or far, lift anything over 5 pounds, drive a car or get attacked by Levi.

Fundraising

While the transplant and current hospitalization is covered, there are a WHOLE LOT of related expenses when it comes to a double lung transplant. The transplant team has told us we need to fund raise, but I'm searchin' for ideas, so thought I'd ask you.

Almost Related...

Holly Orman is the woman who received the heart to match the lungs Leah received. Her wonderful family has set up a blog for her too.

https://www.carepages.com/carepages/HollyOrman

Finally Some Rest

It'd been a tough day for Leah today; from about 3:00 a.m. Right now she is getting some rest, though (finally in her own PJs!). It has all been medicine related. Pain, nausea and a strong groggy/sleepy/brain-not-working-well feeling have all plagued Leah today, not to mention the lack of sleep... They say the third day is always a hard one.

I heard Leah say this morning, "I love my new lungs!" I told her I would let everyone know. So do I! Thank you so much to the donor and her family. We don't know you but you guys are in our prayers... and while I'm at it, thank you to everyone who is a donor right now.

December 15, 2009

Tuesday Night Update

The step-down unit is more quieter than the I.C.U. Leah has her own private room and I can stay here with my cot. Today Leah has been able to drink some liquids and soup and jello. The tubes that had been down her throat had caused some "trauma" to her tongue and it is soar and swollen so it's hard to swallow food. The struggle this evening has been getting the pain meds dialed down. (Leah can handle a whole lot of pain and still smile and do things. I think the doctors thought she was not in as much pain as she was.)

By the way, thanks Gma and Gpa Franks for the hotel room and thanks Guillermo, Jonathan and Gus for opening your house up to me!

...seth

Movin' On

They are getting Leah ready to move her to the"step down" unit. Goodbye I.C.U. Rick and I just finished sanitizing her new room in anticipation of her arrival.

Levi


Levi and I got to hang out together yesterday. It was very good. He happily exclaimed, "I didn't know I was gonna see you today!!" He told me that this is better than Skype, which is better than talking on the phone - but that all of us being home is the best. I totally agree.

Leah's First Steps...



They told Leah that they could probably help her to try to walk tomorrow. She said she wanted to do it today.

December 14, 2009

Day One Down

When I left Leah tonight she was really really tired but awake. They were going to try to give her some meds to help her get some much needed sleep. Even though it was a whispery, slightly labored speech she managed to talk - a lot - this afternoon. Leah had a very experienced, nice and caring nurse through the daytime hours today (apparently during the 3 hours I slept last night it was a different story...). He even crooned a Christmas carol for Leah! (No joke!) I am thankful for the progress Leah made today. With some assistance she even got 0ut of bed and into a chair! I remember noticing in the past that with her limited lung capacity she had to inhale and exhale about once every second; today it was about once every 8 seconds!

A Massage

She's getting a massage - very carefully - from an experienced post-op massage therapist. He had soft piano music playing and the song she walked down the aisle to at our wedding came on.

I'm Alive!

Hinguys! It's me Leah! Praise the Lord. I can't type much because it's hard yknow . heehee i just had a sip of water and itt was heavenly! Okay bye. I love you all!

Extubated

Intubated



Thumbs up!


I haven't posted any photos of Leah today as I haven't gotten her approval yet. I want to make sure she OKs it first... ya know. Here is some of the stuff she is hooked up to...

An ECHO and a Bronch

It's been two hours since I last saw Leah, and I am still not allowed in there for at least another hour while they perform an ECHO and a bronchoscopy. They will put a camera tube down her new lungs to see how they are doing - then they will know if they can extubate her (take the tube out of her throat.) Leah will be happy to know that Dr. Dhillon is working on her today.

Thank you for your prayers!

We want to thank all of you who are praying for Leah and our family. Although this has been quite an ordeal, we have seen the Lord's hand upon Leah in many different ways. We marvel at the fact that He placed a dear friend of ours in the operating room with Leah, provided a healthy, "petite size" pair of lungs for her and gave us all a supernatural peace that only He can give.

1Jn 5:14 declares....... "Now this is the confidence that we have in Him, that if we ask anything according to His will, He hears us."

Please continue to pray for the following:

For the fluid build up in Leah's lungs to be minimal

That the breathng tube can be removed.

For no significant bleeding internally

For her strength and body weight to come back up again.

For the Lord to comfort the donor's family

For Holly Orman and her family, She recieved a heart from the same donor and is recovering in the bed next to Leah

We are grateful for all of your love and support

Awake

Good morning... Leah is awake, unable to speak (she is intubated - tubes going down her mouth and throat, connected to a machine that helps her breathe) and very weak... I actually got to see her late last night too but I was too tired to post... but everything seems to be going according to plan and hopefully they will be able to take the tube out this morning. (There are plenty of other tubes all over her body that will slowly have to come out over the next few days and weeks.)

"She couldn't have done better"



I got to see her for just a moment as they wheeled her into the ICU. "She couldn't have done better!" said the anesthesiologist enthusiastically! "We couldn't have asked for a better outcome!"
Awesome!!

North I.C.U.

We talked to Leah's surgeon and he said that everything went good and they are done with the surgery!!! We are now in the post-op waiting room - north icu - with the heart recipient's family, the Ormans. They should be wheeling her out into the icu any time now! I can't wait to see her!! (She is going to be unconscious still and with a whole lot of tubes coming out of her...) Pray for her quick and easy recovery! Praise God!

December 13, 2009

Notes

The family whose mother/wife is receiving the heart say she is doing good too. Good to know! Someone is getting a kidney transplant here right now too...




Thanks Sheba for the updates!

Waiting Area

Closing!

Sheba just came out of her observation in the O.R. - They are closing Leah up! She is breathing in her NEW LUNGS!!! We just collectively thanked God for getting Leah through this far. Thanks everyone for your continued prayers.

Where the Heart Goes

We met a family whose wife/mother is getting the heart from the same donor that Leah is getting the lungs from. They seem very nice and we all have a very special connection because one person decided to be a donor and both of our families are receiving the gift of life.

Finally - News!

(Seth) We talked to our contact on the inside - a friend from church who is a transplant nurse here! She was able to go inside and see Leah! She said Leah is doing good! She is currently unconscious under sedation and they are right now switching the new lungs into her (anastamosis)!! Praise God! What a blessing from God to have Sheba come in on her day off and let us know how Leah is doing.

Messing Around in the Waiting Room



(Seth)
That's Rebecca there. Just So You Know on the big screen!

Hangin'



(Seth)We should be able to talk to one of the O.R. nurses soon and find out how things are going. The operation could take up to 8 hours. What's going on behind those closed doors? Thanks Kelly, Kyle and Rebecca for the chicken wrap!

It's Happening!



(From Seth) Leah got her port accessed and then just like that they whisked her away to the operating room! We said a quick teary goodbye and now I'm sent to the waiting area. Lord, give Leah Your peace that surpasses all understanding, guide and bless the surgeons and bless this day according to Your good, pleasing and perfect will! In Jesus' name!

Consultation... Waiting...

(From Seth)
We are waiting in a room, Leah has had an EKG, an x ray, some blood tests, a consultation with a TX (transplant) fellow and we are waiting for the call to go to the O.R. at any time now. Leah's family is here. The general feeling here is a bit nervous and upbeat. Thanks for all the prayers!

I GOT THE CALL!!!!

I really don't know too much more..... but yeah!!!!! The surgeon called at around 9:30 and Seth answered the phone. I said I didn't want to talk (because I was still asleep) but Seth handed me the phone anyway.

It was the surgeon saying they accepted the lungs, and to get down to the hospital as soon as possible. I took a shower, and tried to throw together anything I might need. Right now I'm sitting anxiously in a room. I had an EKG and X-Ray, but no one has come in to tell me anything else.

On the drive over we saw so many rainbows. I know it may sound cheesy, but it was amazing. I think it was God reminding me that no matter what happens every thing will be okay.

Seth will try to keep the blog updated as much as possible. Okay blood draw time.....

December 03, 2009

Transplant Clinic

Today I went to my very first transplant clinic appointment (besides the evaluation one.)
It was a pretty long day, we were there from 2:30 to 6:00 pm. It went well. I didn't do PFT's and am glad about that. That test is just exhausting nowadays, and of course the numbers are always poor. It's kind of nice to not have to check them anymore (for now anyway.)

I got to ask some questions that I have been wondering about. Such as:

At what age do they stop accepting lungs from donors?

Do they do transplants on Christmas?

What's my place on the list?

I'm sure I asked more, but those are all of the ones I can remember now. In case you want to know the answers too:

They accept lungs from people up to 55 years old. When they use them from someone in their fifties they cat scan them to make sure they are healthy enough. They even accept smoker's lungs. (I'm praying I get a young athelete's lungs!)

They do do transplants on Christmas day. I don't know why that surprised me - but it did.

My place on the list is still #2. I was hoping to be number one, but oh well. I think I could still be called even though I am #2. They told me that my size might be delaying it. I am very petite, and although my lung cavity is larger than most, I am still smaller than your average joe.
The doctor compared it to shoe shopping, which I thought was hilarious.

We also got to touch on subjects like my LAS score has now been raised to 40, fundraising, and possible anxiety medication. I also got my blood retested and they are checking for C diff again. They also want me exercising more, and are giving me a concentrator that delivers more oxygen so I can get in more cardio.

Overall I think it went well. I guess a lot of people get antsy like I am while waiting on the TX list. I want the wait to be over, and to go onto the next steps! Well that about sums it up.
Kind of a boring post, but ya know, whateves.....

November 26, 2009

Joyful Thanksgiving!

Happy Thanksgiving!!! I have so much to be thankful for! Thank you Lord for the many, many blessings You have given- and for life itself!!

.

Levi made this scarecrow to scare away the birds from eating our tomato plants. So cute!

November 25, 2009

Weighed Down

Today I'm tired, and weary... and sad.

I am struggling. Things are getting harder for me. Today I laid in bed till noon. Yesterday I didn't stand until one o'clock. Mornings are rough times for me, as are shower times. I'm not lazy. I promise. I have to remind myself of that daily. Logically I know I am not lazy, but my brain doesn't let me rest, and a part of it is telling me that I am.

I'm sad because so many sacrifices are daily having to be made to keep me well. Big sacrifices, by lots of people. It stinks. Big, fun plans have to be canceled because of germs, or even the fear of germs. I know that I am truly near the end of my life, and one flu or cold at this point would do me in. I am living in fear- and I HATE that. It is so not me! It is not how I would normally be, if I wasn't being forced into it.

But I have to. Because I'm a fighter too. I'm fighting for my life, tooth and nail, so everything else is on the back burner... even my personality.
I am watching from the sidelines right now... and waiting for my turn to play again. Literally.

Crying has practically become a daily occurrence. I cry for different reasons. I cry because I am in pain. I cry because I am sad. I cry because I'm scared. I cry for other people's struggles. This life is intense!!

My mind is in turmoil. It is really being affected by my physical health. It is freaking out on me because I can't escape the very weak body that I am stuck in. To crawl out of my skin sounds so nice. To be able to take a day off. I would love that. To be able to walk with no oxygen, to have freedom, independence, and energy back! .... Even for a day.

Please pray these verses for me, this is what I am praying for myself.....

Psalm 55:22 (NIV) Cast your cares on the lord and he will sustain you; He will never let the righteous fall.

1 Peter 5: 7 (NIV) cCast your cares on the lord because he cares for you.

Matthew 11: 28 to 29 (NIV) Come unto me all who are weary and heavy burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble of heart, and you will find rest for your souls.


I really need rest.

November 17, 2009

Content

Clinic today. Lungs at 20% lung capacity. Yep, i think it's about time for that transplant... Haha!

Normally after hearing my ever-falling PFT results, I am royally bummed. I try not to ride the emotional roller coaster that comes from hearing that little FEV #, but I always do.

But today was the first time in years that I had PFT's and wasn't totally distraught about the numbers....

(even though they are worse than ever)

I'm just looking forward to new lungs!!!!!!

November 11, 2009

28 days......


.
28 days. That's how long I've been waiting for a double lung transplant. Sometimes I can't wait to get the call, sometimes I dread it.

We should do a contest and guess when it is going to come. I'll go first. ummmm.....
I guess I'll get it the day after Thanksgiving.

Okay, it's your turn. Leave a comment and guess how long the wait will be. I'll try to think of a prize for the winner.

November 04, 2009

#2

Today I called the transplant clinic and asked the update of what order I am on the list. My UNOS allocation score is 38, and I found out there is only one person ahead of me in my blood type/category!!! Oh my goodness! It could be happening very, very soon! I was getting a bit antsy, knowing that time is not on my side right now. I am glad I called, and I can't believe there is only one person before me.

October 14, 2009

LISTED

I am now actively listed on the transplant list. My lung score is pretty high, which places me at the top of the list. Also my blood type is a common one that actually gets the most donors. The nurse at Stanford told me today that her gut feeling is that I will get lungs very fast.

So as of this morning we just wait to get "the call." I could be called any moment of the day or night to come down and get prepped for surgery. We have to be able to drop everything at a moments notice and always be reachable by phone.

Waiting for the call means waiting for someone to die. Please keep the donor's salvation in your prayers along with their family and friends. Please start praying ahead of time for peace for the people who lost a loved one.

Please keep us in your prayers too. It is a crazy roller coaster ride of emotions right now.

October 08, 2009

Amazing Summer

I haven't been very good about keeping my blog updated. The beginning of this past summer was amazing and fun. Here are a few photos of this summer's activities I didn't write about.....