Sunday, November 27, 2011

I am rarely at a loss for words.....Mark this date on your calendar

  I told myself that after Thanksgiving I was going to begin to process this all and well let's just say I've been procrastinating a little.  I guess so much has happened and so many ups and downs have been survived that I forgot to stop and actually deal with them.
   I'm excited to have this opportunity and terrified in the same moment.  He's moving 5 hours away for the chance to give us years to spend together.  I am sad and over joyed all in the same moment.  And when transplant comes I'll be a mess again.....Super dooper major surgery... removing and replacing THREE organs....A bright beautiful chance at a full and healthy life.  The Ying to the Yang, the ebb to the flow.  I literally feel a little fractured some days.
   William is doing really well.  The weather change and the bug that Jordyn brought home has only bothered him a little.  (Knock on wood.) He is gaining some weight and headed to the doctor tomorrow to get some more of the labs and shots that the transplant team wants done before they will list him.  He seems much better at processing all this than I am.  He is just going at all these obstacles (including me some days) and pushing through. 
   I am thankful to all the emotional support I receive from my mom, I know that we all kinda feel swept up in this moment but I want her to know how much I appreciate her.  I love you, Mom, thank you!  And to my amazing group of friends that continue to take my emotional and manic calls at all hours of the day and night, you guys amaze and sustain me.  And thank you to God for continuing to build this incredible testimony with me and my family. 

I know this is short but the lesson for the day is : Pause and reflect.

Thursday, November 24, 2011

Overwhelmed with stress and thankfulness....

   I know it's been a little while since I've updated and I'm sorry for that.  Things have been crazy busy.  Trying to arrange all the pre-transplant appointments, find a suitable apartment, raise funds and shop for a wig(Since I've pulled out all my hair).  Also I have been back at work and trying to get readjusted to the night shift.  We went this week and got family pictures taken for the first time in several years...very excited to send them out and thrilled to have gotten the opportunity.
   We are so incredibly thankful for so many wonderful things.  We are thankful for the life changing opportunity for liver/lung transplant.  We are thankful for the many generous donors that have contributed to William's transplant funds.  Thankful to all our friends and family that put up with me and my mood swings as we go through this journey.  I personally am thankful for a wonderful run this morning to help clear my head.  I am lucky to have such a brave husband and partner through all of this, especially one that lets me nag. 
  Our efforts for the next few weeks is to focus on fundraising and the apartment hunt.  We have raised some amazing funds but still need a little more to get him moved up there and actually on the list.  Until he can establish residency we have to wait to list him.  We are hoping that maybe we can get everything together before Christmas.  As much as I will be sad to spend the holiday away from him I know that it's for the chance of endless possibilities and new life for William.  Please continue to share our story and our donation page with everyone.
    We are working on getting a volunteer meeting together in Kansas City on December 10th, probably in the early afternoon.  Please let me know if you are interested in helping out and I will get your info to my lead volunteers.  We will be doing somethings here in Memphis as well.  We ordered baby blue bracelets that we will be selling for $5 and should be available first part of December.  Pre-order is available and they are already going fast.  Order early and get yours from the first batch. I'll post pictures and ask for orders again after we receive them.
   Well I hope you all are enjoying some wonderful food and surrounded by your loved ones for this day full of feasts and gratitude.  I once again feel so blessed that William has recovered some and is able to enjoy it with us.  Lesson for the day: Be thankful for all that you do have, and for all the silver linings!!

Wednesday, November 16, 2011

And the Verdict is in.....

   Drum roll please......We got the phone call today that we have been waiting for, the liver team called and they said YES!!!! Oh my goodness what a relief and how terribly exciting!  The wait has been agonizing and I'm sure that it has been for all of you as well. Thank you all for standing by us, and it's amazing to know how much support we have as we go through this journey.

  Now the serious fundraising begins...  We finally got our account open with the Children's Organ Transplant Association (COTA) this week and have a website open where you can make tax deductible donations.  Here is the website
It's very simplistic but very user friendly.  COTA has been helping families and funding life saving transplants for 25 years.  We are receiving 100% of funds earned in William's name for transplant related costs. We are grateful to have this resource available to us.  If you are interested in being a volunteer to help us accomplish our goals please contact me.  My long time family friend Kelly Bailey is going to be working with COTA and all of you wonderful people to help us meet our goals. 

   Ok, sorry I feel weird with all the financial stuff but that's where we need help.  Now that we have the medical go ahead we now have to get physically and emotionally ready.  As soon as we have raised enough money William will be moving to St Louis.  While we are anxious about this separation we know that it will be life changing for all of us.  All of this is for good reasons though.  For life full of limitless possibilities. For years full of health and not pain.  For the days over-flowing with possibilities instead of limitations. For breath.....For LIFE!  God I'm so thankful for this opportunity! I am so thankful for our future donor and their family and the amazing gift of life. Please all of you if you aren't already an organ donors consider it and if you are please make sure that your family knows your wishes.  (So I'm totally crying here)

   Please continue to read our story, share it with others, donate if you can(every single dollar counts no amount is too small), consider volunteering and keep praying and send your wonderful thoughts.  All of you whether you know us or not are lifting us up with you tremendous support and we thank you from the bottom of our hearts.  Lesson for the day: Hope works!!!

Friday, November 11, 2011

Hurry Up and Wait.....(Plus some good news too)

  Well yesterday was no different from the others as it contained many ups and downs.  Good thing neither one of us get motion sickness.  ;-)

   We began our day in nuclear medicine where we were supposed to be getting William's dobutamine stress test....I found it a little odd that we were in nuclear med but my brain was already on overload.  Turns out they accidentally scheduled him for a dobutamine thallium stress test instead of the dobutamine echo. We spent an hour there trying to get this sorted out until they said we will just have to schedule it another day.  We are hopeful they can do it before we leave if not we will have to make another trip back up here soon.  Oh well not too bad for all the tests William has had to have a few minor hiccups.  I'm thankful that they didn't do the wrong test and then still have to do the correct one.
   Once we figured out that we weren't going to be able to do that test we headed over to the cath lab for William's cardiac catheterization. They were actually very quick at getting him processed and worked in considering we were about three hours early.  They took William back got an IV started and then let me come back.  Three different cardiologists came in and explained the procedure.  Then his nurse that would be in the OR with him explained it again.  Haha I think we could have explained it to any other patients the rest of the day.  After this we waited and waited for them to take him back, I think we got bumped once by an emergent case.  This was not an overly painful wait for me as I was allowed to eat that morning but for William who had not eaten in almost 11 hours this wait was becoming unbearable.  Thankfully about the time his stomach would have started eating itself they finally took him back for the test.  During this time I was sent to fetch an orange soda and a snickers at William's request.  It's funny the things we crave when we can't have anything.

  After retrieving the food I sat in the waiting room for about 20 minutes and the doctor came out and told me everything looked great and that there would be no problems from his heart during transplant. Yay! (Actually I sneaked a peak at his numbers and they were great.) I waited in the waiting room another 20 minutes or so before they let me back in to see him.  Once back there he had to lay flat another 30 minutes before he could sit up and eat. Finally just after noon they let him sit up and he ate a ham sandwich, grapes, a bag of chips and the snickers and drank his orange soda.  Hungry boy!!

   After eating we had another hour and a half before he would be able to stand up.  All of the waiting was to make sure that his groin area wasn't going to bleed after the procedure.  Finally at 1:35 they let him stand up and I walked him to the bathroom.  We stood in there a few seconds and then he started to "go" he chuckled and said "Yay, it still works!!"  I laughed so hard they probably thought we were doing something naughty in there.  After his successful walk we were finally ready to go.  He got dressed and loaded into the wheelchair.  We had 15 minutes to make the half mile jog back to the Center for Advanced Medicine.  We made it with 5 minutes to spare.
   This next appointment was where we would get our decision from the lung team. This whole part of the day was very surreal.....They walked us back in the room and told us that all the tests showed that he definitely needed a lung transplant and that he would probably not survive without the liver transplant too. (Drum roll please.....) They said YES!!!! So, pending the liver team's answer next week, we are a go!! (The liver team said unofficially that if the lung team was willing then the liver should be a piece of cake.)  It was such a short appointment but it said so much.  All our hard work and all the tests William had to endure finally paid off.  I didn't know what to say or do. I was in shock, William was exhausted. He took a nap, I went for a run through Forest Park.  Both of us trying desperately to process what this means for our lives....This is the beginning of our new lives and we are excited and terrified at the same time. 

   So today we pack up and wait to see if they can fit him in to do this last test then we wait till next week to get our official answer from the liver team.  More waiting but this time we are very hopeful and going to be thrilled to be home and see our beautiful baby girl. Jordyn, mommy and daddy are almost home and we can't wait to see you!! No lesson today just elated and anxious to start this new part of our journey!!! We are so thankful to have all of you pulling for us, your support is amazing!

Wednesday, November 9, 2011

Hippos and Roller Coaster Rides

   Wow talk about a busy couple of days!! Not to mention an extreme roller coaster ride.  (And the hippo we will get to shortly)  Yesterday was our busiest and longest day.  Today was not as bad but seemed to drag on forever due to very long wait times.

   Yesterday started out back in radiology, for the lung scan(see previous post for description). I swear it's going to be hard to sleep with the green lantern sleeping next to me.  Then from there we headed to get William's pulmonary function tests done.  This is where the roller coaster ride begun.  They weighed William for the first time in several weeks, and his weight is down to 120lbs, I guess we knew this was coming following the month we had but it's shocking to see the numbers.  We will put the weight back on I just wish I could do the eating or at least donate some of mine to him.  Next he had more blood drawn to see how his lungs were working(ABG), these tests were an improvement from the last time he had that lab done.  This was the beginning of the uphill part of our roller coaster ride.  From there he did his lung functions and these numbers were great, better than they have been in a year. Up to 26% from 20%!!! Yay!!!

   Next we headed to the liver transplant class. It was very informal and group style.  They explained the process for what would happen when they found a suitable liver, this process is very different when receiving lungs as well though.  From the liver transplant class we took our first of many half mile(no exaggeration here) jogs over to the old hospital and met with the anesthesia doctor.  He was very nice and encouraging and he was the first one that seemed excited about the idea of William being their FIRST liver/lung transplant! Next another half mile jog back to the Center for Advanced Medicine (CAM). My legs are gonna be in great shape after pushing a wheelchair for countless miles through the hospital. To give you an idea of the size of the hospital I took a picture of a scale model of the campus.

   Once back in the CAM building we met the pulmonoligist(lung doctor), he was nice and more importantly on time, this was shocking to us. He told us that all the tests so far were ok and no disqualifiers had been identified.  This is great news as we have completed a large majority of the tests needed for the lung team. He also seemed very interested in the idea of doing the first adult liver/lung transplant. He of course explained all the risks involved with the surgery and possible rejection issues after transplant. Even though we know all the risks it's still tough to hear some of the statistics, I won't bore you with the  numbers if your interested you can check it out on the net.  To us they are just numbers. Numbers we plan on defying of course!

   Next we met with the dietician, oh boy are we ever their worst nightmare.  William's diet has to be sodium restricted and low protein because of the liver, and yet has to be high calorie and high fat because of the malabsorbtion from the CF. Oh and he's diabetic so he has to watch his sugar intake.  I think his options are high fat air and cardboard with no salt.  Mostly she was impressed at our knowledge of the disease processes and that we manage despite these challenges.  From here you can probably imagine we went straight to the hospital cafeteria, a half mile away, and destroyed everything she just said....haha. Hospitals do not have great food to begin with, add diet restrictions and we had fun to say the least. 

   Our last appointment yesterday was with the psychiatrist.  This was also very informal and was pretty much just an assessment of William's understanding of the risks of the surgery and to make sure we have adequate support system(we told him how awesome all of you are).  Then we took our last long walk back across the campus back to the hotel.  On the way back we had a little fun.  Let's just say William was sick of the "big boy" wheelchair and wanted to try out the one from the children's hospital.....
(Told you there would be hippos  ;-) After our long day we had dinner and got some much needed sleep. )

  Today was not as busy nor did we cover as much distance but it seemed to last for an eternity because of the time we spent in waiting rooms.  William, knowing we didn't have as far to go today, decided to show why he is my courageous husband and walked all day!! (Although I really think it might have been his silent protest to me refusing to pull him around in the hippo) First we went to the liver doctors office, our appointment was at 9 needless to say around 10:15 we finally got called back for our 17 minute appointment.  This is actually more what we are used to in other facilities, but they had spoiled us the rest of the week so we weren't expecting the wait.  He was very positive and said that his numbers were great and his MELD score (number determining how badly he needs a new liver) was relatively low and if it wasn't for the need to do both at the same time that his liver probably didn't need to be transplanted yet.  He was informative but quick.  If it had not been for the wait this would have been a great visit.  Just another up and down of our roller coaster ride.

  Next we met with the financial planner and she was glad to know that we had already connected with the Children's Organ Transplant Association (COTA).  She explained our insurance benefits and talked about how much his post transplant drugs would cost us out of pocket.  While some of these numbers were huge we are prepared, with your help to raise some serious funds, to help us kick CF's booty and enjoy William's new life.  I'm sure there will be more opportunities to explain the financial aspect so I won't dive into it now.

  Our next appointment was back to the liver office, however, this time there was no wait.  We were taken right back and met two of the liver transplant surgeons.  I was surprised that one of them was a beautiful blonde bombshell with an awesome accent(and fabulous boots).  They were the most excited and talked like this was already a done deal!! They also confirmed that no disqualifiers had been seen and that pending his two heart tests tomorrow that they were ready to proceed.  His liver transplant coordinator gave me a big hug and a huge emotional lift.  This was probably my high for the day and the first time I felt like this was really gonna happen....fingers crossed!

  Last appointment for the day was his abdominal MRI and if you've ever had an MRI you know this was a long process.  I spent an hour and a half in the waiting room chatting with a friend I haven't talked to in 17 years. (Thanks Katrina it was awesome getting to catch up with you).  William said the test wasn't too bad except he got really hot at one point until the tech realized she had not turned the fan on....ooops!

  So now we just have the two tests left to make sure his heart is in tip top shape and that it won't cause any problems during or after the transplant.  I feel from the feedback we got today that if everything goes ok then we are ready to proceed with listing him. However we won't have any final answers until middle of next week.  AHHHHH more waiting!!! Today 's lesson: If it's worth it, then it's worth the wait!

Monday, November 7, 2011

The Vampire Strikes Back

    I think the picture says it all.  We think it was 33 tubes in all, we lost count because there were some that went directly into a cooler.  Despite our anxiety and that it took two sticks to get all that blood, today went rather well. Better than we expected....lots better than we expected. 

   We picked up the schedule and headed to have his labs drawn, give a urine sample, get an EKG done, and an x-ray taken. Barnes made this surprisingly easy and it was all done in one place!!  From there we met with the social worker, she was a little rough but seems likes shes the type that gets things done.  From there a respiratory therapist walked William to assess his oxygen need.  He did really well and probably will be able to go without it during the day in another few weeks.  YAY!!! From there we went to radiology and had the radionuclide heart scan(see previous blog for description of tests).  And then to get a CT of his chest.  After all the radiation he was exposed to today I'm surprised he's isn't glowing. :-)  The last thing we did today was meet with a mentor, a previous transplant recipient from Barnes. Bethany is a lovely lady and it was nice to see a success story, even though her's wasn't picture perfect. And that was it for the first day...not too bad! We did put in some major mileage but we have the wheelchair thing finally figured out even though I'm not the best driver.
   After all of the appointments our day was pretty boring. We got some groceries, ran a few errands, and drove through Forest Park.  Forest Park is beautiful and it's amazing that it's right in the middle of the city. I'm going to try and get a run in there before we leave.  We watched some Monday night football at the hotel with another transplant recipient that we met.  He's very nice and another success story, he gets to go home finally on Friday.  Tomorrow is a very long day. We start out at 7:30 and won't return till 5 or later, so forgive me if there is no lengthy update tomorrow.

   Again I want to thank each and everyone one you that reads this blog.  As well as all of those who reach out through texts, calls, facebook or just think about and pray for us.  You sustain me! Today's lesson: You really will not run out of blood during a blood draw, even if you think you might.

Sunday, November 6, 2011

Great question....."What kinds of tests will they be doing?"

   We made it safely to St Louis, checked in and had dinner. It's already been a long day and I know I won't be able to sleep tonight.  My sister-in-law, Jessica, asked me a great question today...."What kind of tests will they be doing?"  So I thought I would take the opportunity to answer that here for everyone. 

    We arrive at the transplant office tomorrow and receive our schedule for the week, and it sounds jammed packed! They will be doing the following tests:
  • Laboratory test (This is just a blood draw that will look at liver and kidney functions as well as blood counts and vitamin and electrolyte levels)
  • Urine analysis (This will look at his urine and screen for drugs, as they don't want to transplant someone with a substance problem, but this will also check kidney function as well as screen for infection)
  • Chest X-ray (To look at his lung and heart and to see if he has an active pneumonia, as well as give them a base line to look for changes in the future)
  • Electrocardiogram or EKG (This is another simple test, they will hook up a bunch of stickers to William's chest to look at the electrical activity of the heart. This will serve as a base line and also screen for any unknown problems/arrhythmias) 
  • Echo-cardiogram (This is a sonogram of the heart and the vessels leading into and out of the heart. They can also look at the valves and how they are functioning as well as a general idea of the flow throughout the heart.)
  • Radionuclide heart imaging (This one I'm not too sure about, but I know they inject a radioactive substance so that they can see with x-ray how it moves through the vessels in the heart. It will help make sure that he does not have any build-up or blockages in the vessels supplying the heart with oxygen. they do this to make sure he is healthy enough for surgery.)
  • Lung scan (This is another test that they will use radioactive material to view how air moves through the lungs and also to see how blood moves through the lungs. They will also compare where the blood is vs where the air is to make sure there are any problems like a clot in the lungs. It will also give us a better picture of what shape his lung are in.)
  • Pulmonary function studies or PFT's (These are a series of tests that will look at he flow and volumes in and out of the lungs. They will also do a test to see how well the lungs move oxygen into the blood stream. It's a lot of huffing and puffing but these are tests that William has had to do his whole life. So nothing too stressful here either)
  • Blood gas analysis or ABG (This is another blood draw only instead of being taken from the vein it will be drawn from an artery which makes it a little more painful than a regular blood draw. This will see how much oxygen he has going to all his organs and also how much CO2 is in his blood. It will also look at the pH balance to make sure the kidneys are able to keep up with his failing lungs. I get to do this test all the time at work.)
  • Exercise tolerance assessment (This is just like it sounds they will see what he is able to do and how his oxygen and heart rate respond to increased activity. They will also be teaching him tricks to maximize what he has left of his lungs and to train his heart to have a greater endurance.)
  • Cardiac catheterization (This is a test that carries a little bit of risk because it's a little more invasive than the rest. During this test they will feed a wire from his groin up into his heart and use another radioactive material to check all the vessels of the heart.....again! They just want to make sure that they won't have problems with his heart during transplant. The worst part of this test is that he will have to lay very still for a few hours after the procedure to make sure that the area in the groin doesn't bleed.)
  • Dobutamine stress test (During this test they will give William a medicine, dobutamine, that will make his heart rate increase and the heart muscle pump harder mimicking heavy exercise. This is a test that the liver team wanted. It is again to make sure that he will not have problems during surgery and to make sure there is no underlying problems with the heart.)
  • Psychological evaluation (This will assess William's understanding of the risks and rewards of the transplant and to make sure he will be able to manage the physical and emotional stress of the transplant process. They will also be looking at our finances to make sure this is not an extra stress for him.)

 These are all the tests I know about so far, and only one of them is for the liver team so I'm sure they will have more.  I will find out more tomorrow and I will ask lots of questions... .HAHA I'm so good at that!!  I will do my best to keep everyone updated via facebook and this blog.  Now it's time for this tired girl and boy to unwind and prepare for our busy day. Love you all!

On the road again....

   Well our bags are packed and the car is loaded.  Had a bit of a scare last night when I called the hotel to confirm that William's oxygen had been delivered.  Thankful for Doug at Apria, he was the on call person in St Louis last night, and he was able to track down and confirm that the oxygen had made it to the hotel.  Whew!
   Five hour drive and we should be there around 4 or 5 tonight depending on how often we stop.  Nervous and excited for tomorrow and the rest of the week.  I hope to remain encouraged and that they are informative. I also hope that all the test go smoothly with no complications and minimal pain for William.  Please keep us in your thoughts and prayers as we travel and begin this part of our journey.  I think that I have figured out how to blog from my phone so I should be able to keep you posted....Heck you might even get several updates a day if I'm sitting around waiting for William while he's in a test. :-)
  Well I'm sure there's a lot to process mentally this week and many lessons to be learned.  Hope you all have an amazing week and thank you so much for your overwhelming support I cannot say thank you enough.

Saturday, November 5, 2011

Getting all geared up

   Sunday marks a big day for us. It's the beginning of our transplant journey. Since this is our first post on this blog I will give you some background.....

    My husband William has Cystic Fibrosis. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

   William is 33 years old and his health has declined enough in the past few years that we are now trying to get him on the transplant list to receive a life saving Lung AND Liver transplant. I say AND because the liver aspect of the disease is more rare and because of that only a handful of hospitals in the US do the combined surgery.  We moved to Memphis from Kansas City in May of 2010 to pursue a lung transplant only to be told his liver was too far gone and would need to be transplanted as well. This was a very heart breaking set back for us, as we had put all our efforts and finances into moving to Tennessee.  Unfortunately Tennessee is not one of the locations that do the combined Liver/Lung surgery.  Pittsburgh, Duke and Barnes (STL) are the only ones we know about that do.  We have been accepted at Barnes-Jewish Hospital in St Louis to be evaluated for transplant.  This evaluation begins Monday at 7:30am. Very exciting and very scary too. During this evaluation they will assess William's overall health and readiness for transplant, and also that he will be able to survive the surgery and that he has the support to get through this journey.  We are hoping for good news and will definitely keep you posted.
   Now for a little more info about us....William and I married in 2006 and we have a beautiful 5 year old daughter, Jordyn.  She keeps us very busy and is the light of our lives.  My name is Kelly(for those that don't know us personally) and I am a Respiratory Therapist which has been very beneficial in dealing with CF and all that it can throw at you.  I am an avid runner and I love to eat. William is a very caring and loving stay at home dad. He loves football and all sports.  He loves cars and his family.  We are kind of home bodies right now but post transplant we will be set out to conquer and see the world.  When William's health was better he loved playing sports as well as watching them, and I LOVE to travel.  I hope to be able to take William camping someday, its one of my favorite past times. 

    We have and will continue to go through whatever life has to throw at us with open-minds and hearts and we fully believe that on this journey we will learn all the amazing things that life has to offer.  We are learning life's lessons together. Please join us.