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)