Friday, November 30, 2007

Day 6 after surgery

It's been a fun couple of days here.  My sister had been here helping with the day to day stuff.  She left yesterday, flew down to Portland.  And then went on to get our car.  That was a huge help.  It was much better than me catching a ride to Salem.  Just to turn right around head back north.  I would have been on the road for at least nine hours.  I didn't want to leave Lonye for that long.  
Dave came up yesterday afternoon and spent a few hours with us.  It was nice to be able to spend time with him.  Then, this morning our nephew came up with his girlfriend.  He's the "nurse in training" on the slideshow I just posted!  Pat, Lisa & Julie were here for several hours too.  I thought we were going to have to kick them out (I was worried that it might start snowing and they would be stuck here).  I'm sure their families wouldn't appreciate that at all.
We are still not clear as to when Lonye will be discharged.  It could be this weekend.  It just depends on when the two remaining chest tubes come out.  I think he is a little nervous.  Because once we leave here, we are pretty much on our own.  A few minutes can seem like an eternity when you have a medical crisis.  Even though the docs & nurses say "call us any time"...  we all know you call the number (it's an answering service, the doc or nurse has to be paged.  Then they call back).  All of that takes time.  He has just a tad bit of anxiety.  I can certainly understand that.  It does sound as though the team is anxious to get us out of here.  I am sure there's good reason for that too........ oh, the germs in a hospital, yuck!!

Some of our visitors

Thursday, November 29, 2007

It's a better day!!!

I'm sure you've heard, "there are exceptions to every rule", in hospitals, I think it's even more true.  When we first arrived in ICU we were told that patients can not have family stay over night, if they do, you must sit/sleep in one of the chairs in the room.  They also said that at "shift change" you are REQUIRED to leave the room and go out to the waiting area.  So, we tried to follow the rules.........it wasn't long until I met a few of the family members of patients.  One lady told me that she stays w/her husband 24/7 (even at shift change, hmmmm).  Then, I met another lady who has a cot (yes, a cot).....  I was told there are none in this hospital.  So, now I have a cot and I don't leave at shift change.  The moral of this story is this:  the one time I try to follow the rules, I end up sleeping in a metal chair for 4 nights!!!  I won't make that mistake again.....  For all of our nurse friends reading this, I am not in any way advocating for bad behavior or bullying.  I am an advocate of asking TO BE THE EXEPTION!
Well, that's enough about me!  Lonye continues to impress the docs!  Another chest tube came out this morning, that's two down and two to go.  We met with the transplant coordinator, she says that he will most likely be released from the hospital this weekend.  There is a chance it might not to be until Monday, mostly because the transplant team is out over the weekend.  The weekend docs will play it safe.  If there is any question whatsoever he will remain here through the weekend.
She also counseled us on post transplant activities.  It's so easy to think, he has new lungs, so he's "fixed".  The truth is, a lot of work goes into maintain the health of those lungs.  The anti-rejection meds make him prone to illness/rejection.....  not just for a few weeks or months, but forever.  The good news is that his activities won't be limited very much.  He will just need to be cautious.  If we are in a crowded area, he will need to wear a mask.  If he is in a construction area where earth is being moved, he will need to wear a mask.  And the medications, there are MANY of them.  As he puts it, "it's like trading one disease for another".

Wednesday, November 28, 2007

We've moved out of ICU!!!

The best thing about ICU is the staff......  the nurses are amazing.  The worst things about ICU are the noise, the noise and the noise.  So, we are happy to move to a private room on "the floor".  
Lonye is able to have visitors, just remember to wash your hands.  The anti-rejection meds reduce his immune system so he is more prone to infection/illness.  Also, we can get phone calls. So, contact information follows:
(206)598-6753 - direct line to our room (I say that like it's a hotel!!)
Rm# 5214 (5th floor, northeast)
Lonye had a much better day, after we got his pain meds corrected.  He went for several walks today.  The Physical Therapist came in and demonstrated some exercises that he needs to be doing.  
We still have not heard when he will be released, but he does still have 3 chest tubes in place.  It is our understanding that he won't be going home with those.  The nurse came in tonight to change one of the drainage basins for chest tubes, the package includes an actual tube that is used.  I grabbed it so that I have it as a "keepsake", don't tell him......he will be grossed out.


A rough night

My sister came up yesterday to babysit me.  She got a room at a nearby hotel.  She let me stay there last night to get a shower and a good night sleep, which I enjoyed.  Vicki, my sister, stayed here with Lonye.  Apparently, the epidural is no longer doing it's job.  Which is to prevent the incision pain.  So, he had to endure severe chest pain all night.  Vicki called me at the hotel at 5:00 this morning to tell me what was going on.  Of course, he was worried about me so he kept telling her not to wake me up.
I arrived here at about 6:30 to find Lonye shaking, in incredible pain.  The pain management team is on the job and I think we are back on track now.

Tuesday, November 27, 2007

Another day in ICU

We thought Lonye would be moved to the floor today.  There were no rooms available, so he's still in ICU.  He did get one chest tube removed today.  That's not something you want to watch if you have a weak stomach!!  His only comment was "one down, three to go".  He won't be released from the hospital until all four have been removed.  We are hoping that will be some time this weekend.  There's still alot of work ahead.  But, he's determined to get his life back as soon as he can.
The only concern the docs have so far is that his CO2 level is too high.  Hopefully, they will be able to get that figured out soon.
Thanks to every one who has called, emailed & posted a comment here.  Lonye reads every one of them.  It means alot to him that there are so many people concerned about us.
I have met many of the families of other patients in the ICU...sadly, Lonye is certainly the exception, not just in his recovery.  We have so many friends and family who have stepped up to help us.  There are folks in this ICU that don't even have family members who come to visit.  We feel so blessed!!!!  Thank you all again.  Love, Deanna

3 days after surgery

Lonye has made great progress the last few days!  He did four laps around the ICU yesterday.  As you can see by some of the photos, it's quite an event to get him up and about.  That's mostly because of all the tubes, hoses, etc.
The docs have signed orders to remove some of the IV lines and two out of the four chest tubes. 
The chest tubes are to drain fluids away from the lungs.  They are extremely painful.  He's very happy to have some of them taken out.  
We will moving to the "floor" today.  That means out of ICU!  It's really hard for him to get any rest because of all the monitoring devices, bells, beeps, etc.  
One of the lung transplant coordinators came in yesterday.  She said that the average hospital stay is between 7-14 days.  Lonye will be out of here by day 7 or 8 if he continues to improve at the same rate.
He's eating well, more than I've seen him eat in ages.  That's very encouraging.  
I will write more later, when we have him moved to a different room......  

Monday, November 26, 2007

My Brother

Hey

Just want you to know how proud I am to have you as my twin brother. You mean more to me than words can describe.  We share a special twin thing that not many people ever get to experience in life.  I will always be here for you!  We are both starting a brand new life (journey) together and its going to be awesome!!!!! We both have had so many chapters in a our book of life and this new book will be the best paper back ever!!! Love you tons! - Your Brother

The road to recovery

Good morning!  And it is a good morning.  I have put a slide show to the right with some of the photos we have taken during our stay here.  Lonye is truly amazing.  You probably think I am saying that because I'm his wife.  He really wants to recover as quickly as he can.  He keeps telling me, "I'm doing this for you and Shelby".
I have been trying to take photos of his nurses, I only have one doc so far.  I almost forgot about them!  The nurses in ICU have been awesome.  They are making sure we keep Lonye on task so that his recovery is as speedy as possible.  They have had him up and walking a few times, sitting up in a chair and he's eating.  All of this within 24 hours of surgery!!
I am heading down to the hospital....  please if you are reading this, take time to send Lonye a note of encouragement.  Thanks to everyone for your support and encouragement, we appreciate it very much!

Saturday, November 24, 2007

NEW LUNGS - AT LAST!!!!!!!!

It's been a long day.  To top it off, we lost our internet access.  I am back on line for a while this evening.
The surgery went really well!!!!!  
To the best of my recollection (I am exhausted) Lonye was moved up to the ICU at about 8am. 
It took about an hour for them to get him settled in, we were able to go in at 9am.  His looked (still does) really good.  He was on the ventilator.  He was heavily sedated.  
He has been doing great all day.  At about 2:15pm (just 6 hours, 15 minutes after arriving in ICU) the vent was disconnected.  He's breathing on his own!!  Of course, I was right there when the tube came out, I saw a tear in the corner of his eye as he took his first breath.  I asked if it hurt, he shook his head "no".  Then I asked "are those tears of joy"?  He nodded "yes".  It's been quite an emotional day!  We are so excited I can not even begin to tell you.
I have to get some sleep.  I will post more when I can!

This is it!

The surgical nurse just came out to say that "the new lungs are going in as we speak"!!!  We have no idea when we will get another update.  

Getting closer

Well, it's sometime after 1 am on Saturday morning.  Lonye has been moved to pre-op (I will post a photo later).  They just kicked us out because it's time for his epidural......  we asked the nurse to let us know when it's "for sure".  He said that the lungs are on the way here from way north in Alaska.........they put us down in the Radiology waiting area.  Can you believe there's no chapel here?  How can that be?

Friday, November 23, 2007

Still waiting to hear

We did get an update........  the lungs are coming from Alaska.  A doc came in a few minutes ago and said that Lonye will go downstairs within the next hour or so.  He will be down there for about 4 hours before surgery.  We have no idea when the lungs will actually arrive here.  So far, so good.  
We are all tired.  It's been a long day.

This could be it!!!!!

Well, here we are in Seattle again.  Maybe this is really it!!!!  
We were at home this morning getting ready for our day.  Shelby was supposed to go to a movie with Uncle Lee and Zachary.  Lonye and I were going to run a few errands and then come back home.  At about 10:30 this morning we got a call saying to come on up.  Dr. Mulligan will be doing two transplants today. 
I called Chet to come out to the house and get Shelby.  He was in town so came right over.  In the meantime, Zachary's grandma came and picked him up.  We were on the freeway by 11:30am.
We got here at about 3pm.  We went down to Radiology for the chest x-ray.  Lonye had his blood drawn, thank goodness it was much easier this time. From what we have been told, the surgery will be sometime after midnight, if this is the "real thing".  It sounds like the donor might be from Alaska.
I am posting some photos, and will update as we hear anything new.   

Monday, November 19, 2007

Link to UW webtv lung transplant documentary

I have attached a link to a video from University of Washington.  This short documentary tracks 2 UW patients who have undergone double lung transplants.  These patients have a different lung disease than Lonye.  Also, both of these  gentlemen were recently diagnosed, whereas Lonye was diagnosed with Cystic Fibrosis (which is genetic) as an infant.  The last half of this program speaks about the transplant process.

For those of you that are interested, scroll down to the bottom of this page.  Click on the link.  It will bring up a list of programs available for viewing.  Go to the one titled "New Lungs - a gift of life".  Although this video is tastefully done, there are some images of an actual surgery (not recommended for small children, or Lonye).


Friday, November 16, 2007

What are you thankful for?

The title of this blog is "Lonye's transplant journey". The truth is this is a journey that we are all taking together. Lonye, this blog is about you and for you. It's also about sharing our hearts.

Next week is Thanksgiving! We have so much to be thankful for. I told you last night, that as we get closer to that one day each year that is set aside specifcally to celebrate the things that God has given & done for us, "I can't help but get a little emotional". We (you and I) always say that "things happen for reason", and I believe they do. I also believe that they happen in the proper time too. Just think about our life together! We met when we were still kids. The wonderful thing is that over the last 17 years we have really grown up together.

We have been through so many things. There have been losses of family (my dad, your mom, grandparents) and friends. Do you remember when Shelby was a tiny baby? I thought that girl would never stop crying. But she did. She has become our greatest joy! She is so much like you, it's amazing. I love to sit back and watch the two of you. She loves the times when you get down on the floor and play legos or a board game (maybe it's because you let her cheat sometimes) with her.

We have gone through career changes, marriage & divorce of family members, the list goes on and on. The point is this. Through all of this life together, you have remained constant and true. You have and do provide a safe and comfortable home for us. I remember the times when I have asked "how do you feel today?" and a few times you have said, "I hope you never have to know how I really feel. On my very BEST day I feel worse than you do on your very worst day". I try to stop and think about that once in a while. I very rarely get sick at all, when I do it's usually a cold. I did get strep throat a few years ago, I didn't get out of bed for three days.

I see you now, getting more tired with each passing day. Yet, you go to work as much as you can. Knowing you as I do, I would worry if you didn't go in. At the same time, you need to reserve your strength. There will be plenty of time for that in the months ahead. I have more love, admiration and respect for you than I will ever be able to put into words. I know you hate it when I get all "sappy". I want you to know that (like you told me the other day) I have no regrets. I love you will all my heart and I always, always will. Thank you for the husband and father you have become. I am so incredibly proud of you!

So, I am thankful that I have you!

Wednesday, November 14, 2007

Going back

It seems like I have left out so much of the story.  I will try to go back and remember.....
The official call to notify us that Lonye is listed came at 6:49pm on July 19th.  It's funny how that memory is so fresh in my mind.  We were told to have a bag packed.  We could get "the call"any time.  The average wait is right around 4 months.  It was right around that time that the docs told us that Lonye needs to be using oxygen full time.  He had been using it at night only.  The transition was actually easier than I thought it would be.  For those of you that know Lonye well, you know that he is a very private person.  I was very worried that he would use the O2 at home and not be willing to use it "in public".  The doctors made it clear that a lack of oxygen can and will, damage the heart, making a transplant more complicated.  So, although he might not like the fact that he has to carry around his O2 tank, it's necessary.  And he does it, without complaint.

The most difficult part of this process is the fact that we will need to remain in Seattle for up to 3  months post transplant.  There are many complications that can occur and the transplant teams requires that we remain in the area.  Shelby will be staying with Chet & Tracy (my brother & sister in law).  She is very excited about the thought of staying with them, Aunt Tracy always has tons of fun things going on.  She's warming up to Uncle Chet, although she's still a tad bit scared of him.  

I mentioned yesterday that we have had two dry runs.  Here's my recollection of those:
October 29, 2007 was a normal Sunday.  I gave Shelby a bath that night we all went to bed.  For whatever reason, she was not able to get to sleep.  I went in to rub her back and fell asleep myself (leaving Lonye in our room).  We were all sound asleep.  The phone rang at about 10:40pm.  I woke up a little disoriented, then realized "the phones ringing".  I rushed in to our room to find Lonye on the phone.  We were both so shocked, scared, excited all at the same time.  He said, you'll need to talk to my wife.  He handed me the phone.  The person on the other end (I think it was Shawna) said, "I think we have lungs".  She went on to tell me that we have 5-6 hours to get to UW.  So, we were able to drive.  We frantically began getting dressed, got our stuff into the car and headed to Seattle as fast as we could.  We arrived there at 3:00am.  

We arrived at UW and checked in at Emergency (there is no one in admitting @ 3am).  We were sent up to the unit.  Lonye was taken right away to Radiology for a chest x-ray.  Then, back up to the intake area for pre-op tests & blood draws.  It took 4 nurses 3-1/2 hours (no kidding) to get the blood that was needed.  Then, we were told to wait and try to get some rest.  At about 7:ooam a nurse came in and said that the donor lungs were too short and therefore not a suitable match.  We headed home.  

The next call came one week later.  It was Sunday morning, approximately 7:30am.  The phone rang, we thought it was Lee :) calling.  I answered the phone.  Kathy from UW said, "I think this is it, only this time there's not enough time for you to drive".  We had a plan in place, if we needed to fly.  So, we arrived at UW at approximately 9am.  It was the same scenario, check in through Emergency, get an  x-ray then upstairs to the unit.  We were placed in the same room as the previous week.  Thank goodness, they were able to use the test results from the blood draw of the first week.  Lee took us to the airport, then took Shelby to Chet & Tracy's and then he headed straight for the hospital.  In the meantime, a nurse came in and told us that "they will come to get Lonye at about 11:45am".  A nurse did arrive right at 11:45. I was able to go down to pre-op (I promised to be good) with them.  We were told that he would be taken in to the O.R. at about noon, the surgery was scheduled for 12:30.  It was about noon.  I told the nurse that Lee should be arriving at the hospital "any minute", she promised to direct him down here.  A few minutes later, Lee arrived with my camera (which is why we have the photo here).  They wheeled Lonye away and told us that Dr. Mulligan will find us when the surgery is complete and give us an update.  We should hear something within 4-5 hours.  Lee and I went to the cafeteria then headed back to the waiting area.  Lee went to tell the nurse where we would wait.  He came back just seconds later saying, Lonye's in his room........  WHAT????, I asked.  Apparently a nurse came in just as Lonye was being moved from the bed to the operating table and said, "not today".  We were sent home within an hour.  

It wasn't until the next day that we were told that the donor lungs were "too wet" for transplant.  The donor had been given a medication that caused them retain "massive amounts of fluids".  The lungs were not suitable for transplant.

The sad thing is that the following evening our phone rang at about 9pm.  Shelby immediately began to cry.  She just knew that we would be going to Seattle again!  Every time the phone rings, she pays very close attention.  We all take notice for sure!  She knows that she will be safe and she will have fun with her Aunt, Uncle & cousins.  She also knows that Daddy will be in the hospital..........

Tuesday, November 13, 2007

I got the idea to create this blog from a coworker (thanks, Megan).  So far, we have had two "dry runs" to Seattle, we call them false alarms.  Whatever you call them, the truth is, it certainly seems real when we are rushing to Seattle in the middle of the night!
I am about 4 months late in starting this blog.  It seems like it would have been a nice way to keep in touch, and let people know what's happening.  I will try to write often.  You never know, maybe it will help me in some way too.  I do have some catching up to do, this could be a long entry.
We have known for several years that there could come the day when Lonye might need to consider a lung transplant.  We traveled to Stanford in January 2004 for a transplant evaluation.  At that time the team said he was years away from even considering the possibility of transplant.  They also said that we needed to come up with money to cover the gap between what our insurance covers and the cost of the transplant.  That translated to several hundred thousand dollars!!!  
His health has remained relatively stable for the almost 17 years that we have been married.  About 9 months ago I began to notice that things seemed to be getting more difficult.  Walking for a long distance or up a hill, carrying heavy objects.  To make a long story short(er), he had a doctor appointment in the spring.  I went along because I was concerned.  After a standard breathing test, his doctor told us that he thinks it's time to start thinking about transplant.  The funny thing is, we both knew it's time.
We know that God has a plan for all of this.  And He is in control of the outcome.  There are so many issues that we had been concerned about since our initial evaluation in 2004.  All of those concerns have been eliminated or resolved, and not by us.
The transplant team at UW is amazing.  Every person that we have talked to and/or met with up there has been extremely professional, caring and helpful.  Exactly what you would want in a stressful situation.
And then there are our friends, family and even our community who have been willing to help us every step of the way.