Lessons in humility

This is an entry that I have been trying to write for several weeks.  As you have probably noticed, writing does not come easy for me.  My thoughts get jumbled and I do tend to ramble.  So, I apologize in advance.......

As I have said before, Lonye & I have been married for almost 17 years.  We have not had to ask for help very often.  As a matter of fact, I think we were too proud to ask.  That all changed this year.  I remember this summer, the transplant team told us that we only needed one more element in place to have Lonye "listed" for transplant.  We needed to have a transportation plan.  They require that we have the ability to arrive at the UW within 3 hours of "the call".  Of course, that meant flying.  I was directed to call someone that knows quite a few of the pilots at Salem Airport (I am not going to say names here only because I don't have permission from the folks who have been so kind to us).  Anyway, I spoke to this gentleman.  He told me about a friend of his who owns a plane.  He gave me his name & phone number and suggested that I call him.  The conversation went something like this.......  I said, "my name is Deanna, _____ told me to give you a call.  My husband has been listed for a transplant @ UW etc, etc, etc.....  I told him everything.  Lonye has Cystic Fibrosis.  We need to be up there in 3 hours......  Now the amazing part........  He said, "I have a plane at the airport.  If it's here & I'm available I will be happy to fly you and your husband to Seattle".  It brings tears to my eyes every time I think about that conversation.  I had never met this man (still haven't), yet, he offered to help us.  If that's not enough, the first contact person then developed a detailed plan to get us to Seattle, including a town car from Boeing Field to UW.  He had a spread sheet with the names & phone numbers of pilots and planes.  My job was to call him, he would take care of the rest.  And he  

Then, there were co-workers who provided info on flight options.  Some one pre-paid a Charter from Portland if the other options didn't work out.  Of course, Ed & Patty have opened their home to us.....  we just met them in July!  Our co-workers have covered for us while we have been away.  I hope that each of you know how much we appreciate your help, we never could have done this without you!

Our family has been unbelievable!!  We always knew that we could count on our brothers & sister, but you guys have been amazing.  Chet & Tracy took Shelby for 3 weeks.  Since they live in Hubbard, it was Chet who took Shelby to school every morning.  She loves to talk in the car on the way to school (and talk, and talk and talk).  Chet likes a quiet ride in to work, you can see how that could be a little annoying.  I'm sure it was.  I'm sure her cousins (Owen & Nolan) will be glad when this is all over and they don't have to share their stuff with a girl!  Shelby loves them very much, but I do think Aunt Tracy is her favorite.

Lee has been on this ride with us from the beginning, literally.  He even went to Seattle for the evaluation.  He was there for both "dry runs" and the real thing.  He came over once a week to help clean the house, do laundry, anything we needed.  He stayed at the hospital with us for the first 5 days.  Then, came back to take care of Bear (our 15 year old poodle).

Vicki came up the day Lee went home.  She stayed with us for the next 4 or 5 days.  She even went back home, got my car and drove it back up to Seattle so that we would have a car.

I know that I have not mentioned everyone who has helped (or offered to help)....  these are just a few of the highlights.  

The point is.....we would not have made it this far without all of you!  Thank you so very much for the help, the thoughts and prayers.  Most of all we thank you for your kindness & love!

The Day after Christmas!

     I hope everyone had a very Merry Christmas!  We had a nice day it started out with Lee and I going to the cemetery to put flowers on mom's grave and then Lee and I went down town and took back some stuff then we headed back to my house around 1:00 and had christmas with dad, he had brought over some presents for Shelby and Zachary.  They love to see there grandpa!   Dad left around 4ish and me, Deanna , Lee and the kids had christmas dinner.  Deanna fixed this beef brisket recipe that she found, it was really good.  The kids opened the presents from Lee and us and had a lot of fun.  Christmas morning we had to get Shelby up to see if santa came she did that last year too.  She loves presents but sleep was her focus, thats my daughter!  We had to be at Chet's house at 1:00 for brunch so we were kinda rushed that morning but we made it on time.  Lee came with us because Laura had Zachary christmas morning at 10;00 so we invited him to come with us and glad he came.  We are still trying to get used to them not being together.  

     Health wise I am still doing well.  I have coughed for 41 years every day of my life so its weird not coughing any more or clearing my throat so just been remembering some of the things I did before the tx.  They are still adjusting my meds so I am getting used to how they make me feel.  The shaking should go away soon as they get the doses lowered.   I want to go back to work so I will ask them again when we go back on the 1st if I can just work just a little even ifs a few hours a day but I wont push it.  I know there is a reason why they don't so I understand.  Its very important that my bones heal back and stuff so if they say no I will have to wait.  THey have been very fair and trusting by letting me go home in between appointments so I don't want to loose their trust.  It's funny some of the nurses that we talk with during the visits just almost have a heart attack that I am not staying close to the clinic and that I am so far from them.  We tell them the doc says its ok  and not to tell anyone else, like other patients that I am gone.  For me its just another day of stuff and then move on but I think most of the nurses forget that a person that has CF already deals with this type of regimen and we can manage and deal with it.    Deanna and I will head up to Mercer Island on the 1st and stay with Ed and Patty and come back hopefully the 3rd after my scope test.   We will let everyone know how the appointments go after we find out how all the testing went.    Hope all is doing well and I will post next week after my appoints to let everyone know how I am doing.  Take care and see ya soon!

Me

delayed update!!!

Lonye had a follow-up appointment on Monday.  We were at the UW all morning.  We arrived there at 7:30am and left at about 12:3opm, after the usual blood draw, x-ray & pulmonary function tests.  The amazing part is that Shelby went with us.....  She was an angel all morning! She is becoming quite the big girl, and reminds us of that often.

Lonye's numbers are all right on track, he's doing great.  The only issue is that he's still retaining some fluids.  Also, the bronchoscopy did show that there is some psudomonus (the bacteria that was in his lungs pre-transplant).  The doc says this does occur sometimes and needs to be treated with an inhaled antibiotic (Tobi).  Lonye has taken it before and didn't tolerate it well.  The doctors say that shouldn't be an issue now.

Lonye is going a little stir crazy (therefore making ME crazy).  So, he asked about a return to work plan.  They said under no circumstances can he go back to work for 3 months!!!!  I hope we don't kill each other before then :)

We are very happy that we will be able to spend time with our family at Christmas!  And are looking forward to many more in the future.

To My friends, family and wife....

I would like to thank all of you from the bottom of my heart for the prayers and words of encouragement over the past few weeks.  I was given a second chance to be a husband to my wife that i love more then words can say, a friend to those that i would leave behind and most of all to continue to be a daddy to my little girl which is the greatest gift and feeling that god has given me.  When I decided to have this transplant it wasn't to live longer it was so I could be there for my wife and my little girl and take care of them so they are safe and protected.   A life was lost for me to have this gift and I will never forget that and I will always share this experience with people so they knew what a true gift it was.   Its easy to say wow what a miracle.  but in reality  its a daily regimen of meds, cautious efforts and the upmost respect for how i live my life from this day forward because of the gift that was given to me and the life that was lost.  I have wondered if i am worthy of this gift and the answer is tough because i would rather give then receive and thats why i will honor this life that was lost so i can breath another day.  So thank you, thank you, thank you for the prayers that helped me and my family thru this time.  God bless all of you!!

5 day pass

Lonye had his bronchoscopy yesterday.  Dr. Edelman (Pulmonary doc on the transplant team) said that it looked pretty good.  There was some fluid in the left lung.  They took a sample & sent it to pathology.  We should know the results by tomorrow.  He did say that there is a chance he could "grow out" the same thing as prior to the transplant.  He did not say how likely that is, just that it could happen and if so, Lonye will need to start on another antibiotic.  We are scheduled to go back in on Monday, December 17th.

Knowing that we have that much time between appointments, I said "I know I have asked this question a few times, but, we are HIGHLY MOTIVATED.  When will it be safe for us to make a trip home, even if it's only for a few days"?  I said, "we have a 5 year old, she misses us a lot".  He also has a 5 year old, so he could feel our pain!  He thought for a second, then asked me a few questions (Lonye was still too doped up to know what was going on).  Finally, he said, "You can go back tomorrow as long as you come back on Monday, and don't tell any of the other transplants patients!!!!  He also reminded me that it's only been about 3 weeks since Lonye's surgery.....  he's still recovering and needs to take it easy!  I said the only difference is that he will be resting at home!

We drove down today, yes, we are home!!!! We came down this afternoon, drove straight to Willamette Christian and picked Shelby up from school.  She didn't know we were coming, she was so excited to see us, and surprised.  She will go back up with us on Sunday.  We will stay in Seattle until after Lonye's appointment(s) next week.  Actually, this is a trial run, we are trying to convince the team to allow us to come back up for appointments.  We don't want to do anything to slow Lonye's progress.  So far he is doing unbelievably well.  We, of course, want to continue on that path of recovery.

One thing I have forgotten to talk about is how much better Lonye feels already.  First, he is eating like crazy.  He has more energy than he's had in a very long time.  We were going to the Bellevue Mall almost every day, just for something to do!  The hard thing for him will be to relax a little and take it easy so he doesn't hurt himself.  It is possible for the bones to shift if he is not following the directions/rules of the transplant team.  I have sworn to monitor him 24/7 ......  to make sure he's taking his meds etc, but also to make sure he doesn't over do it.

I am so happy to be home....  even if it is only for a few days.  We will see what happens next week!!!

Lonye & Dr. Mulligan

Post op appointment with Dr. Mulligan

So, we met with Dr. Mulligan today.  He said that Lonye is healing nicely.  He is retaining fluids, which is normal.  He did prescribe some water pills, we are hoping that will help.  Lonye had an xray, that looked good.  There is a little fluid around the lungs, but nothing to be concerned about.  From what we were told, we won't see Dr. Mulligan again unless there is a problem related to the surgery.  So, we hope that we won't see him again!

I am attaching a photo of Lonye & Dr. Mulligan!  He told us that he lives here on Mercer Island.  Said if we have any problems, "yell loud" (the island is not very big).

That's all for today!  We are back at the UW tomorrow for a test & then a meeting.

A busy weekend

Lonye had his first post op appointment on Friday.  We met with Dr. Edelman, had blood work, pulmonary function test and an xray.  His FEV1 was 68%!  That's even up 1% from last Monday.  The docs say that it will go up even more over the next 3-4 months.  His meds will remain the same for now.  The prednisone will be reduced some at his next appointment, which is next Friday.  Next week he has appointments on Monday, Tuesday & Friday.  Monday is with Dr. Mulligan, the surgeon.  Tuesday is another blood draw & a bronchoscopy (I have no idea if I spelled that right), so we will be at the UW a good part of the day.  Then, Friday we go back in for another appointment with Dr. Edelman.  So, lots of follow up! 

Lee came up on Friday, he arrived here at about 6:20pm, he brought Shelby & Zachary with him, of course!!  We were so excited to see all three.  Shelby jumped into my arms.  That was short lived though, she got down here and just wanted to be with her dad.  It was very sweet.  The first thing she said to him was, "Daddy, can I see your owie?"  Lonye showed her the incision, I thought she was going to cry.  She spent the whole weekend by her Dad's side.  She wanted to make him feel better.  It was very sweet.

They went back home this morning, Shelby cried when they left.  I'm sure she was fine by the time they got on the freeway.  Owen's birthday is today, so she had a birthday party to look forward to.  And, Tracy's Mom made a blanket for her stuffed elephant, Peanut.  She was excited to see that too.  If you see this, thank you Nancy!!!  Shelby talked about Peanut's blanket all weekend.

Ed & Patty had two of their grandkids over on Saturday morning, Emma & Jennifer.  Their parents were with David (the oldest) at a swim meet.  They came over for dinner on Saturday night, we were invited too.  We had steak, baked potatoes, corn & salad.  We had a great dinner.  Dave, Tanya & the kids were delightful.  The kids played all night!  It was alot of fun!

We are hoping that we can go home next weekend to check on the house, pick up Shelby and come back for Lonye's appointments the next week.  This plan has not been cleared by the transplant team, so we will have to get permission.  Even if we can go home for one night, it will be nice!  We will know more later this week!  We have been told that we should be able to go home for "a day or two" at Christmas.  We are looking forward to that for sure!!!

Almost 2 weeks post op

Tracy called this morning and said that Shelby has reached her limit!  We have to get her up here, whether I5 is open or not.  She woke up at midnight saying she misses Mommy & Daddy (notice she said Mommy first - at least that's what I heard).  We are working on an alternate route.  But, hopefully, Lee will be able to bring her up tomorrow.

Tomorrow is Lonye's first post-op appointment with his Pulmonary doc at UW.  Then, he has an appointment with Dr. Mulligan on Monday.  I will let you all know how those appointments go and if we get any clue as to when we can come home, even if it's just for a day or two.  

Lonye's appetite is back!!!  He even got up early this morning because he was hungry.  He hasn't done that for over a year.  He's already put on some weight!!  He will eat us out of house and home at the rate he's going - but I'm not complaining.

Thanks again to everyone for staying in touch, it means the world to both of us.

a few visitors

The hardest part

Tonight was the Christmas program at Willamette Christian School.  Shelby's in Kindergarten there!  Chet & Tracy bought her a new dress, tights, shoes & hair accessory (just like I would have) and took her to the show.  I am sure she was very cute and did a great job.  Lee went too, said he wouldn't miss it.  I called him just before 7:00 and asked him to call me after the show.

He called at about 7:45 and said that when Shelby saw him, she came running across the room and jumped into his arms.  She sat with him, and told him that the freeway is closed.  She went on to tell him that if it doesn't open soon, they won't be able to go to Seattle this weekend.  

Tracy called right after that, said that Shelby did a great job, but she misses us.  So, she got on the phone and was sobbing.  Then I started crying, which made Lonye feel bad.  Being away from her IS the hardest part.  We both miss her so much.

It's also really hard to be away from all of our friends (and the rest of our family).  It means the world to us to read your email, guest book entries & comments too.  We read them every day, without fail.  It really does make it easier.  We are very routine, so to be this out of our element is stressful to say the least.  Add being homesick and it's even worse.  So, thank you so much for all the thoughts & prayers.....we need them!

FREEDOM!!!!

After spending a good portion of the day waiting, Lonye was finally discharged at about 3pm today.  And not a moment too soon! 

We had another rough night, in that, the two remaining chest tubes were removed yesterday.  The team did not tell us that the wounds could (and probably would) continue to drain for 24+ hours.  So, Lonye woke up in the middle of the night to find his bed soaking wet.  He was more than a little freaked out!!  To make matters worse, he almost had to beg the nurse to change linens, bring him new pajamas, etc......  can you imagine, yuck.  I could go into more graphic detail, but I won't.  Trust me, it was pretty bad, not painful, just disgusting.

When we got up this morning, Lonye immediately began asking "what will it take to get me out of here today?".  We were told he needed and x-ray, and a pulmonary function test, meet with the home infusion nurse (for the iv meds he will do at home for a while) and meet with the respiratory therapist.  In our world, this should be able to be completed in a few hours.  In the hospital world, it takes 9 hours...... and that's with a LOT of pushing, pleading and begging.  That's right, we got up at 6am, we left after 3pm.

Before we left the hospital we told the team that it's almost time for Lonye's pain meds & we're out.....  we went straight to the pharmacy to get the presciption filled.  Wouldn't you know it, our insurance would not authorize the pain meds.  After about an hour we finally got it resolved.  But, of course not before he was in intense pain.  It has been several hours now, so he's feeling better.

We are settled in our temporary housing here on Mercer Island.  It's awesome!  It's like a home away from home.  I know I've said it before, but we are blessed to have so many good friends!  Mary Hafner & Ronna Chandler came up today!  They even got a mini diabetes training session, probably more than they will ever want to know.  Seriously though, it has been so nice to have friends come up to visit.  

Still here

The good news is......  all of the chest tubes have been removed!  The bad news is we are still here.  It looks like tomorrow is the big day.  He will be released to go to Mercer Island.

I was talking to a lady tonight, Bonnie Bentz.  Her husband, Darrell was the transplant patient that had surgery just hours before Lonye.  He just came out of ICU yesterday.  He's here on the regular floor now.  I asked if he has been up and walking.  She said, he walked around his bed today.  They have to go back in tomorrow and have a "small procedure" done.  I guess I am talking about this here for two reasons, first every patient and circumstance is different (and we can thank God that Lonye is doing so well).  Second, please pray for Darrell & his family they live in Lewiston, Idaho and have been here in Seattle since August.  It's been a long rough road for them and there's more to come.

Before we can be discharged we have to receive instruction on the breathing exercises that Lonye has to do every day.  The medication that he is taking also has lots of side effects including diabetes, rapid heart beat, weight gain the list goes on and on.  We also have to keep daily records of his vital statics (weight, pulse rate, blood pressure, temp.) and pulmonary function tests.  It sounds like a lot of work, but I'm sure it will become old hat.

We are looking forward to leaving here so that we are one step closer to going HOME.

Getting out!!!

The surgical team came in while I was typing the last post.  The two remaining chest tubes are coming out today!!!  They want us out of here today too.  They said that the longer we remain here at the hospital, the greater the risk that Lonye will develop an infection.  

So, we are all packed.  We are just waiting for them to pull the tubes and get us out of here!!!  I will post again, as soon as we get the official word.

It's time to go..........

You know it's time to leave the hospital when....

1)  the nurses now take at least 1/2 hour to respond to their call light - they know you don't need them any more.

2)  they forget to give you the bedtime meds

3)  you wake up at 4am for your daily x-ray and then remain awake, making your wife go crazy

4)  you start to stalk the docs in the hallway and beg to be d/c'ed (discharged)

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

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".

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.

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......  

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!

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?

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.   

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).

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!

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..........

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.