Speed Bump

Julie is not doing as well as she has been. Her O2 sats are down from the high 90's to the low 90's and even the upper 80's. This has occurred just over the past 2 weeks and we suspect its either from a spider bite on her hand, or a virus she got from the boys. Interestingly enough, I'm posting when I am apprehensive about Julie's future. It seems to be that way; every time things get questionable, I post on the blog. Its sort of therapeutic, especially since I can see how many are concerned for her welfare.

We have been so busy with life; trips, golf, soccer games, hiking, my career, Julie's zumba class, swimming etc. Life, for a time has seemed to go on, and it has been wonderful. My only hope and prayer is that my intuition about Julie is still correct. I am reminded of a talk by Jeffery R Holland on hope; "If it was right when you prayed about it, it is right now."  Ironically I am glad we go through this type of thing in life. It keeps me grounded, remembering what is most important, and ultimately drawing Julie and I to God. He is what brings peace and direction in times of trial. Almost instantly, endeavors like staying fit, making and saving more money, or making that next improvement to our home take a far back seat in our minds. Spending even more time together comes back to the front and I wonder how it settled behind anything.

The psychological drain this puts on Julie is enough to make your stomach turn. All the hopes and dreams she has as a mother and a woman come into question. I can only imagine the emotional roller coaster she has been on over the past decade. She rarely cries, only when she is scared, and that was Wednesday morning as she dropped me off at the airport for work and headed to the U for testing. It is brutal that I couldn't be up there with her this time, but that is life isn't it? I will keep you posted.

Unconditional Love ONE YEAR POST

One year ago tonight, Julie got the call.  We spent the evening tonight looking at our photos on a slideshow on our TV.  I have this overwhelming feeling of gratitude and love for my entire family.  I was expressing to Julie that this feeling is a common thread among people.  We all have deep indescribable love for our children and those who show us love almost innately, including our parents siblings and close friends.  It is the only way I can somewhat comprehend the love of our Savior and our Heavenly Father for us.   

It was about this time (10:30) of night that they rolled her to the ER floor where we waited for a never ending but quickly passing hour.  It went by so quickly, but while we waited there and took those possibly last pictures together, the time seemed to stretch; like a Saturday when you have no responsibilities, or Christmas as a child.  Later that evening while waiting for our first call around 2:00 am, I wrote a post to my twins: To my twin boys:
It was a letter to them about their mother with a hope for a future with her.  As I wrote it I remember becoming a little emotional thinking about the possibility of them not knowing her and her love for them.  It was one of the only times I looked away from what I felt so strongly was to come; the bright future of new experiences we have only begun to experience with them now. 

This past year has not only flown by, but it has been rich with experiences and joy with our children and our family.  As we watched pictures come up randomly from the past decade it struck me how quickly life changes.  Some of the hardest times of our life however are sometimes the richest.  Living life through trials with your head up as Julie has, helped us enjoy it.  We experienced a lot in those first 4 years of marriage.  Julie made a point to try and lead her life as if she wasn't sick.  We took out the time and effort to get out of town, even if it was just a small trip.  For one, getting all the equipment in order was always a juggle, but the pictures reminded me of the bliss we had in spite of the hardships of CF.  We looked so happy and at peace.  There is no doubt in my mind that we were carried through those times by family from the other side.  There were distinct experiences that suggested that specific people from our past were near us.  Just to know they were there was enough to move forward.

As I reflect on what we were going through last year, I remember the outpouring of love, prayers, and fasting that was given in Julie's behalf.  I feel like I am indebted to humankind forever for the support that helped us realize insurmountable results.  I want so badly to pass it on and lift others to know and see what can be accomplished in their lives.  Conversely I think about the family who lost someone a year ago and am pained to think that they lost their loved one to an unexpected tragedy.  My love for my children is so deep that I weep when thinking of losing them as a Father and Mother did a year ago.  There are many people who are both infirm and healthy who hope for a better future but aren't afforded one.  The family members of those people suffer in a way I do not yet know.  My hope is that they can remember the sweet times of tenderness with that person; whether it was at birth, 4 days before death, or somewhere between.  As I watched my own married life through pictures tonight, I realized how great life has been; I saw the love in my eyes I have for Julie and vice versa.  I am going to bed tonight feeling fulfilled and content with what the Lord has blessed me with.  May God be with the family who lost their loved one last year by helping them remember the blissful times.  The fact that this individual most likely made the decision to be a donor without taking much thought to what it could do for several families is evidence alone that there is a higher power out there.  He or She has extended and enriched my life and Julies life beyond what we ever dreamed of but always hoped for.  Thank you.





We are looking forward to another great year; Julie pushing me beyond my limits and watching Ben and Jack learn and grow...and use the toilet already!   

A Stark Taste of Reality

Updating on Julie's status has been nothing short of easy. I haven't written about her in months; I think May was the last time I did this. There is good reason too; we have been so busy living our life. The mantra of 'no news is good news' has definitely been in play. Julie has taken on some hobbies of her own. The most notable by my standards is her desire to golf. During the summer she was pushing me to take her almost once a week. "When are we gonna golf?" She'd say with an expecting voice. We got out several times with her dad and sometimes her brother Matt early in the mornings around 6:30 or 7:00. It was good to see them together. One week when I was out of town, she went with them early in the morning on her own. It was great to see that independence.


To watch her dad with her on the course sheds light on him as a parent. He is so proud of her. She of course has natural born Jackson athletic talent, so despite my taking swinging lessons, we sometimes score the same on holes. She is extremely competitive. It's a side to her that has always been there with other aspects of her life like staying healthy and being diligent on her treatments. But to see her in a sport counting hers and everyone's score puts an ear to ear smile on anyone who knows her. She is much like her Father; having a great time, but ultimately wanting to beat the next opponent.

Julie also has done some hiking with me. In early June she was on this kick to hike Bells Canyon. She started out by hiking up to the reservoir and with my parents and I. On June 23, She, my Dad and I hiked to the waterfall. It was a 4 mile round trip and was a push at the last 1/4 mile up the steep stair like trail. She made it to the falls and I was so proud of her. She was running about a mile in Rehab, but she wanted to do something early on to fuel her endeavors. At the time she was only 3 1/2 months out doing a moderate hike that the vast majority of Salt Lake County has never done. It was great to see her not only do the hike, but recover well.


Naturally with Julie feeling well, we took a few "close" trips. The Transplant center at the UofU wanted us to stay nearby those first few months so we were careful about when and where we went. We took a road trip to Vegas in late May, had a few over nighters at my Cabin in Millcreek, weekends at Julie's parents place in Midway, Bear Lake, St. George, and in August we took a trip to Dana Point in southern California. Vegas and S. CA were trips with just the two of us and it was great to spend time together without anything attached, both literally and figuratively. We had little burden of looming illness or actual illness. We spent time on the beach, golfed of course, and went to a lot of shops and boutiques. The latter was not my favorite, but in light of everything that's happened this year I was just fine with it.

Here are her FEV1's over the summer:
May 2: 84%
May 25: 86%
June 27: 89%
July 27: 91%
August 3: 93%
September 14: 81%
October 7: 77%

In September, we were surprised to see a sudden drop in lung function. They quickly got her in for a broncoscopy and took some biopsies to see if there was any rejection. The results came back clear; no inflammation and no scarring. It made sense to us though since Julie was feeling tired during the day at times, and got winded a little more and wondered if things were getting harder. "It wasn't a drastic change, I just wondered why it was harder to keep my O2 sat's up". Over the first weekend in October on a Saturday morning, We decided to take a short 3 mile round trip hike to Secret Lake in the Albion basin in Alta, UT. We took the twins with us and it was a great hike with beautiful fall colors just before the first snow up there. Ben and Jack took there sweet time on the trail at times laying down on their stomachs to look at rocks and bugs. Julie noticed and asked if it was a harder trail than Bells canyon. I told her we were at a higher elevation at 9500 ft. and her lung function had dropped. That next week when she had another PFT and her FEV1 was down to 77%, we were even more concerned. Dr. Cahill decided to treat her for rejection even though the biopsies were clear. Last week she had three days in a row of 1 hour infusion of 1 g of solumedrol. That is essentially 200x her daily dose of 5mg of prednisone. So far, it seems as if it has helped. Her O2 sats are higher in the upper 90's as she works out as opposed to the lower 90's. Her physical therapist was encouraged on Monday when he saw that. She feels like she has more energy and isn't as tired. It may be residual affect from the steroids last week, but we are hoping it is better lung function as well. We will know once she has her next PFT's.

The stark taste of reality came on monday when Julie went up to rehab. One of the other patients informed Julie that a girl who was about 3 months ahead of Julie died last week. We knew she had been in the hospital and was dealing with some rejection, but it was a shock to hear she had passed away. This girl had been an influential part of our decision to go forward with the tests to be placed on the list. We spoke with her about a month or two after she had been transplanted and she was doing very well. She was hopeful for a new life and excited about having a family. She had a lot of questions for us in that light and we sort of connected with her. It hit me pretty hard and for the first time in months, thoughts of death and raising my boys as a single father naturally slipped back into my mind. It reminded us how finite this life and blessing of new lungs is. Anything can happen, at any time. After it sank in, hope entered back into my mind. The good that comes out of it is new resolution to stay extra clean, work out regularly, and just be diligent in what we can control. After all, that is all we can do. A lot of this is out of our control, and sort of the luck of the draw. However, much of this is in the Lord's hands. We know what Julie has been promised and have seen many of the blessings that were given to her at a young age, come to reality. Our lives have not come to the crossroad of death yet. I have full faith that whatever our path is in life, we have been born with an ability to not only bear it but enjoy it. Ironically we both have peace and hope for a long future together, raising and enjoying our children Ben and Jack.

Thank You

I want to thank Paul Cardall along with all the other talented artists who performed the night of my Silent Auction/Benefit Concert. Thank you to Steven Sharp Nelson, Marshall McDonald, Charley Jenkins, Ryan Stewart, Ellee Duke and Peter Breinholt.  We appreciate all your support and donating your time to help in my behalf. The night really was a memorable success because of all of you.  We can't express enough the gratitude felt that night, it touched us to our very core.

We want to send a special thanks to all of those who donated and supported us. We realize the selfless sacrafice it takes to serve someone else and sometimes it's not easy.
We love you.
Thanks again,
Julie and David Hendrickson

Julie's Running with the family

Julie and I decided to go up to the new trail above Tanner park on 2700 E. on Friday night. We started out just walking up the new paved trail. Every few minutes I would ask her if she wanted to go down below to the river, or if she was doing alright. She would just reply simply, 'No lets keep going.' Before we knew it, we were at the bridges that go over I-215 and I-80. By that time, she had a bit of a side ache. I told her, "If we go over these two bridges and up that hill over there we will have walked all the way to Wasatch Blvd." 'Let's go.' So up we went to the top.

This was the first walk of its kind for Julie and I and the boys. Any other walk would have accommodated and oxygen tank on wheels, and would have been much shorter. To my surprise, after taking a few pictures of her and the twins, she asked, 'Should we run back?' I had to act non-chalant and act like I wasn't just blown away. It was incredible to me that I watched my wife truck it up about 2 miles of uphill trail. To hear her suggest we jog back was invigorating. I found myself holding back emotion as I thought of how proud her father would be as soon as I sent him the shaky video of her running as I run beside her. This picture above shows how she just kept motoring along.

Julie had been postponed at rehab that day and she left irritated that they moved her time without telling her. She was really looking forward to hitting the milestone 15 minute run in. I think she had it in her mind she was going to run when we started the walk. When we got close to the end, she realized she had set her glasses on the jogger at the top. We had to get back and drive to Wasatch before it was dark. Luckily they were right there next to the curb at the top where we took a picture of her. On the way home she asked me if I was going to run in the morning. She wanted to join me and we called her Dad to come along. She told me she wants to do something amazing 2 months post op. I told her, "You just did!"

Saturday morning we hit the pavement and headed to Sugarhouse park. What was really cool was to see her exceed the limits she had mentally put on herself by running on the treadmill. I had a Garmin GPS with me and I told her her pace was much faster than she was used to. To her surprise she was feeling okay. That being said she immediately toned it down to pace herself. As I ran along side her, within a minute or so she was back to the pace she was at before. So much of exercise and what we do is limited by what we think we can do. I was simply amazed at what I was watching. She has amazing drive!
Look at the smile on her face! She initially told me in the hospital that she didn't want people in rehab asking her when her first race was going to be because she didn't want the pressure. At that time, I don't think she had any idea the amount of energy and ability she would shortly have. I am so proud of her and her hard work. Nice job Jules!

It is very motivating to see someone take full advantage of what is so selflessly given to them. It is at times like these that I can't help but think of the selfless donation one decided to give when they had no intent of dying soon. This donation of life is truly that, a new life for my wife and family that we otherwise would not have without organ donors. THANK YOU!!

Photos of Julie's life as a mom before transplant.

Julie was on cloud nine when our boys were born. This first pic was in January when they were one month old. Notice the oxygen cannula next to Jacks head.






This was the first hospital stay after they were born. They were two months old. This was typical to bring the boys up to see Julie, feed them, and even create a make shift bed on the floor with a mattress so they could nap.














This was during the summer of 2009. Again look at the joy she has on her face. She loves being a mom to these boys.










The pictures below are during a hospital stay in August of 2009. Julie is always taking care of them!

JUICE!!

This was another hospital stay on a walk with the boys.

Summer 2010 watching a movie with Ben and Jack...most likely a Pixar.

















Lake Powell next to the house boat with the oxygen "ball and chain" tubing. We talked about this possibly being the last time we could go down with her health declining.










We made it to Newport in the fall to take the boys to the beach. The satchel on Julies shoulder is a portable oxygen concentrator. Much like the picture below, We tried to get as much in last year as we could.




Julie insisted we make it to Small World, I insisted on Autopia, and they were fortunate enough to get suckers the size of their heads because that is something Julie remembers most about Disneyland.












Still being a mom despite going in and out of the hospital. This is a great picture depicting how happy she was last year. She will sit with them and admire them as she teaches them how to eat.











Anyone who knows Julie, knows how much she loves Halloween. She goes all out and orders costumes for them 2 months before.





See what I mean...She was Stawberry Shortcake.















Julie discovered that Jackson wanted to eat his yogurt by himself with a big boy spoon. You can see the pride in her eyes.
















And then the call came. We rushed to the hospital wondering what was going to happen in this crazy process. We were thinking of the donor family and what agony they might be going through. We had peace about Julie and the outcome that was to be weather good or bad, and prayed that the donor family would feel the same peace we felt.














These pictures were early in the morning after pulling an all nighter as we got news that she was off bypass and we were through the worst of it. What a relief but still intense as she wasn't closed up yet...

Day ONE, Sunday March 6, 2011

Day TWO, Just 24 hours after getting out of surgery she was walking. When they extubated her, she immediately sat up in her bed.

Day THREE

Day FOUR, Looks comfortable right? These are the chest tubes for drainage. That is 3 of the 5 that were in her. That is what limited her breathing the first few days.

Day FIVE, she's getting her attitude back, "What are you doing??" I cheered her up by taking her to the cafeteria and getting some onion rings.

Day SIX, IV pumps are depleting along with tubes.

Day SEVEN

Day EIGHT

Day NINE, Oxygen hung up.

HOME!!

I planned on doing this for a long time, so here it is a picture time line of the life before transplant and the fight that brought her back so quickly. The day by day is so telling of her determination and fight. She is alive today because she can be a "pain in the butt." She knows that if she has to be this way to get prescriptions filled, take her meds on time and work relentlessly at her workouts. She is THE MOM!! We are so proud of you and so happy you are fighting to be here. We love you Julie!

The Morning Show

These last couple weeks have been rather hectic.  Dave was out of town from Wednesday through Monday last week on business.  The good thing about him being gone for that long is he was awarded Golden Kiwi, one of the top sales reps of his company (Fisher & Paykel Healthcare).  What that means is an all expense paid trip for he and a guest (me/wife) to Laguna California at the St. Regis Resort for 4 days.  We are so excited; We need this trip. I was proud of him winning this award in spite everything he has been through this year.  I am really so proud of him.

Yesterday morning Dave's cousin Paul Cardall and I were fortunate enough to be guests of the 'Radio from Hell' morning show with Carry Bill and Gina on X96.  It was fun and also nerve racking.  Paul is so good at that stuff.  I just kinda followed his lead.  People called in and there was one guy, Glen in particular who called in and asked me a couple of questions.  I didn't get a chance to answer his question completely.  I wish I could have talked to him longer.  I remember he was 21 and has CF and wanted to know more about transplant.  If you are the young man who called in this morning and read this blog, please don't hesitate to ask me questions.  I am more than willing to talk to you and I know you will know what Creon 20, PFT, and FEV1 are.  Everyone seemed to be confused.  Basically, it would be nice to talk to you and not have to spell everything out.  When you said you had been in the hospital recently and the Docs had mentioned transplant to you a couple times, I wondered if your doctor is Dr. Liou.  Because if it is, and he has mentioned transplant, you should probably do the work up.  Dr. Liou wouldn't just throw the idea around lightly.  Dr. Liou has also written one of the top papers on this matter specifically.  It's a ten page model on when CF patients should get sent to transplant.  Nearly the whole country uses some form of this model that the UofU created.

To hear the podcast go to: http://itunes.apple.com/podcast/radio-from-hell/id387475772
Click on May 5, 2011 Ask a heart/lung transplant recipient

Submit to What You Can't Control

Julie has been dealing with a lot of nuisances this week. With her blood sugars everywhere, nausea, vomiting, bloating, sinus pressure from her CF and a sore incision, this week has been a bit rocky. The other night she was weeping because of the pain it was causing. She doesn't cry very often so I knew she was in excruciating pain. She couldn't even keep her pain pill down so she had to just tough it out. Finally after a few minutes of watching her suffer without any power to do anything, I asked her if she would like a Priesthood blessing. She accepted. I don't remember particularly what was said, but once I was done, we tried a few new approaches with a heating pad my mom gave me, and a Lortab. For the cynic out there, a priesthood blessing at the very least gives you clarity of mind. It is a time to meditate on what is going on for the giver and the receiver. From our perspective, it is what was needed for us to have the inspiration of what to do. She was so bloated she said 'I feel like I'm going to explode out my incision'.

It is difficult to watch anyone suffer, especially those you love. Many times we can do nothing but call on a higher power for help. This is very consoling, and can bring peace, even for the non-believer. When we submit to what we can't control, it seems as though things play themselves out and improve. I can compare the feeling I had the other night to how I feel when my child is sick and inconsolable. You feel helpless, frustrated, tired; and then you think about how they are feeling, and what you are feeling doesn't even matter. I couldn't do anything the other night but watch and assist. It was tough, but then again, not that bad for me. She had a hell of a night; she is the one who was cut in half just over 6 weeks ago. She is the one who had her diaphragm pushing up on her incision without any pain med or even Tylenol in her body. She is the one who couldn't vomit or go to the bathroom to relieve the pressure. Gas ex, miralax, milk of magnesia and other remedies didn't even touch it. But after a blessing with the power of the priesthood and more importantly her faith it would help, Julies mind became clear, and she knew exactly what to do. I don't know what we would do without this power of prayer, priesthood and her faith. It has made very intense situations, not only bearable, but low stress. When there is a problem, we have been able to assess what is going on and act. It is a real power that cannot be denied.

This picture was taken at 4:48am last Saturday morning after feeling bloated through the night. This wasn't the night I just described. However despite feeling crummy, and not sleeping she took this picture of her nails and sent them to her Mom. "Look at how pink my nails are."

We have had a lot of positives in the past week. Julie is a bit of a star up at the hospital. Her nurse told her she heard how she was showing off in rehab by running. Julie said 'I'm not showing off, I just want to get better.' Her determination to be compliant is truly what is causing her to thrive. At times I hear the nurses talking to Julie saying things like 'we are so proud of you' or 'you are doing fantastic'. Her doctors on more than one occasion have told her that her recovery is remarkable. Despite her nausea this week, her nurse said, 'How many weeks out are you?' "Six" Julie replied. 'Unbelievable.'

Our nanny took Thursday off so Julie had her first few days alone. I arranged for my mom to come over when the boys woke up. She told me she would call her. To my surprise on my way home yesterday she called and was there alone with the boys in the background; My mom wasn't there. 'Was I supposed to call her?' "Yes! I don't want you lifting those kids." When I got home I asked her how it was taking the kids by herself. "Awesome" she said. "I didn't have to have anyone here." I was a little taken back by her response. She felt empowered; to do mom things by herself. Our nanny called in sick today and she had the same attitude, however this time I made sure she didn't take the kids out of bed by herself. Her friend Heidi came over to help her.

Life is moving forward. We have struggles, but who doesn't? This has been a good week despite what Julie has gone through. She still has to be careful what she eats so as to not upset her stomach, but she just told me it feels like shes got a handle on it. Little by little life is not only back to normal, but better than it was.

Downside up: Nebulizer discontinued

It's hard to believe that Julie doesn't have CF in her lungs . We were on a walk yesterday over to our friends and as we were walking up a hill by our house, Julie and I both were amazed at how effortless it was for her. Yesterday Kelly Julie's nurse called and discontinued the nebulizer treatments that she was doing four times per day. Each treatment would take about a half hour and she would have to plan her day/evenings around them. When I walk into our room now, I don't see machines, and tubing, and a basket full of neb cups on the side table. It is so surreal. We are just about at 6 weeks post op and my life has been turned downside up. We are already getting used to how things are right now. All that 'stuff' is becoming the exception, and not the norm.

I have learned a lot from this experience. I have learned that no matter how bad things get, they can always get better. Despite the looming possibility of bad news, even now, Julie has taught me to live today, and don't stress about tomorrow. It's been in a way that you wouldn't expect though. Julie is an analyzer and a thinker. There is a lot going on in her head that I don't even know about. It is not uncommon for her to ask me questions about what she is feeling or what side effects she is experiencing. She will often state the worst possibility. I will counter that with what I think is going to happen, or what I think the side effect is from and try to lift her up with some hope. Over the years I have found that she typically already knows or believes what I tell her, but she asks me so that she can verify it in her own mind. By staying positive (partly to keep from going insane) and countering her sometimes worried question, I have come to believe it. Sometimes my response isn't what she wants to hear, but again I find it is typically what she believes already. We had to come to terms with a lot over the past 4 years. I feel like we would hash things out as they came and then in Julie's words would "Go for it". Coming to terms with having to have a transplant is a classic example. It was a real nail biter. When things gradually get worse, you adapt and deal with them. Our lives were turned upside down in November when we were told to consider this procedure. Julie had the world view that she wouldn't do this unless she was on her death bed. We had to come to terms and face the fact that despite her fight and will to live, she could easily get sick and rapidly decline. Waiting till then was as we learned was not an option. Going in and out of the hospital is actually something we got used to. It was always a goal to keep her out for as long as we could with out causing permanent damage. The window between hospital stays was narrowing, but there are great advancements around the corner with the treatment of CF so we continued to hope and fight. When this was brought to the table last year, our so called plan to get Julie better was interrupted.

This may all sound ungrateful, but I think this is what happens to a lot of us. As I have made goals and had hopes throughout my life, they seldom play out the way I want them to or think they will, but the outcome can still be there. I am overwhelmed with gratitude for this process as with the joy this outcome has brought my wife and I already. I believe it is important to have mental goals, but to be okay when things don't play out as we plan them. It is not always bad despite what is in front of us.

Free at last

Yesterday Julie sent me a text while working that said: "So my PFT's were 76% (FEV1)! Dr. Cahill said I look fabulous! She wants me to discontinue my antibiotics: Meropenem, Ciprofloxacin, Azithromycin, and Bactrim. I got labs today and I show negative on any infection. I jogged today [for the first time] and it felt good. My white blood count is a little low so they want me to discontinue the Imuran (anti-rejection) [for now]. I kind of have the shakes because of it. So I'm getting a blood draw again on Friday. So far so good. I'm discontinuing my Lasix pill as well (water pill). My weight is back to base line."

She was giddy when I called her after my lunch appointment. I could hear her giggling about not having the Meropenem. In case you don't remember, it was a 24 hour infusion that went into the port in her arm. Consequently the tubing would get caught all the time on the hardware in the kitchen while doing dishes or preparing food. She had to shower with it, go to the bathroom with it, ride in the car and slam the tubing in it etc. Naturally she called it her ball and chain. When I came home the first thing we did was de-access her port (pull it out after flushing it). She was a new woman! She is free from all tubes for the first time since she was around 20 years old! She was up for a walk and here is what we did:

KSL News Story

Video Courtesy of KSL.com

Oxygen Gone!

It's been one month since I recieved the call for my lungs. Today Praxair/Apria came and picked up all of my oxygen:  two liquid oxygen tanks (R2D2), an oxygen consentrator, six E-Tanks (steel gumby), and two pressure gages. What a relief! I have more room in my closet and no sight of R2D2s and steel gumbys (our name for e tanks). I am so excited to finally have some normal space in my house instead of having it decorated with medical equipment. I can't believe it's gone. People would tell me it might be mentally hard to get used to being without oxygen, but if I don't need it, I don't need it and if I do need it I will order it. I am fine without it. I do have to admit after I had my first biopsy the drugs made my respiratory drive slow down so the PA advised me to nap with .5 Liters of O2. I was parinoid so I did exactly that. I got an E-tank out and napped and slept with it all that night. Previously being on a Bi-pap at night on 6-8 liters, an e tank wouldn't cut it, especially all night long. I really didn't need the oxygen the second night after my bronc, but my sweet husband had to tell me straight up, "you don't need it, you are saturating 96% while you are sleeping". I was just mentally comfortable with wearing my oxygen.  Now I can say the oxygen is gone and I'm ok with it. Another positive, last night I invited my husband back into our bed. That is a sign I am feeling good enough to sleep through the night and not have one eye open from the pain. I can sleep through his light snore again. Dave was probably relieved to finally come back to a nice comfortable bed instead of being on the couch for three weeks.

"Rolling with the punches": An exerpt from Julie's Journal

March 31, 2011

I received a double lung transplant on March 5, 2011.  It was successful and for that I am very grateful.  I am still recovering, but am doing great.  I can't complain, although there are bumps in the road I have to deal with.  For example:
1. In the hospital, I had a stomach ache so bad, Dave had to come up at like 2:00 in the morning to be with me. (Please excuse my sloppy handwriting, I just did an albuterol treatment).  This stomach ache was from the antibiotic Cipro (taking it without the anti nausea med Zofran).
2. Not being able to be with my babies, or hold them. Ben and Jack have had coughs and runny noses.  Walking around the house with a mask on and trying to stay away from them has been extra hard.  Thank goodness for our nanny Mary.  She has been our saving grace.  And my husband Dave; He has been wonderful with taking care of the boys and doing the grocery shopping.  He does so much for this family. 
3. When the pain pills wear off your body is trying to protect itself so I would get a purr like sound in my lower airways.  It felt like mucus was in there and it would create a little bit of a collapse.  Early on after the transplant, my x-ray showed I had a little collapse up by my right shoulder.  They had to do a couple bronchoscopies to clear out the big airway so the little airways would be able to open back up.  When you have a collapsed lung that sounds scary, but really they can fix it & there's nothing to worry about.
4. Prednisone makes me have all the side effects: water retention, moon face, protruding stomach, depression, mood swings, and high blood sugars.
5. First bronchoscopy with a biopsy at day 21: Lower airways are inflamed, no rejection, but treated like it.  Intravenous Solu-medrol was given Thursday, Friday, and Saturday for 50-60 minutes.  Its a steroid in the same family as Predisone and has the same side effects only this was about 50x my daily dose so they were amplified.
6. Bypass during surgery: This was unexpected but my CO2 levels were too high.  They had to cut the end of my sternum off and bypass my lungs for over 4 hours.
7. My knee hurt from "water on the knee" but after the Solu-medrol, the pain has left.

At the same time, things have gone extraordinarily well too:

1. The lungs were a perfect fit.
2. The surgery was a success.
3. My incision is healing up great.
4. I have had a fast recovery and was only intubated for 24 hours post op.
5. I had my first walk only a few hours after I was extubated.
6. I was in the hospital for only 9 days, and they could have discharged me in 8 days. (Sometimes things move slow up there)
7. My first PFT's on day 19 were 68%; I was most likely around 25% prior to surgery
8. My PFT's on day 21 were 71% and that was the "Best they've seen" (for a cystic fibrosis patient post op) said the Lead RT in the CF unit.
9. The bronchoscopy on day 21 showed pink lungs and Dr. Cahill said, "I'm bored."
10. During rehab I am able to advance and work up a sweat every time I go.  Before, I didn't have the lung function to even break a sweat.
11. The first time I went to rehab my O2 sats were at 99% when I got there.  I used to always desaturate when I would go down there.
12. I was discharged from the hospital without oxygen.

Small things

I am noticing the small changes in our life already. On more than one occasion I am waking up to a cooked breakfast. This is so foreign to me. The last person who made breakfast for me was my mother...in high school! The first morning this happened, after telling me it was ready, I continued to get dressed. She asked me, "What are you doing? Don't let it get cold, it's rude." I love it. How do you say no to that?!

She is also not claustrophobic whit it comes to sitting next to me on the couch. Before, even if my arm simply touched her side she would need to move. She couldn't have any pressure on her lungs, it restricted her breathing. I'd put my arm around her and she'd say 'I can't breath' half seriously. On Saturday when we watched a movie she cuddled right up. I find that I'm the one moving now.

Every improvement is subtle, but noticed. I was surprised at how much basketball I was able to watch last weekend. I still feed the kids, but she's preparing the food while I do it. We are more of a team than ever before. I'm not constantly being ordered around like an indentured servant. Any annoyance I used to have was quickly nipped in the butt by the elephant in the room: the woman I'm married to looking at me with an O2 cannula on her face! We used to jokingly say 'You've got a good set of lungs, get up and get it yourself!' Julie of course took this to the next level and would say it to Ben and Jack when they started whining for something. She has a dark and contagious sense of humor. I'm just waiting for the right time to use that line now; and not flinch after saying it!

Julie's PFT was up to 71 today. Dr. Cahill is impressed with her healing. She said today, "I'm getting bored." Jules still had her original steri strips on her chest and doc took them right off. Julie told her it's getting harder to remember to do her 2nd and 3rd neb treatment on time during the day right now. She doesn't sense the need like she used to. Dr. Cahill said "Don't say that; I don't want to hear that." Her O2 sats are still upwards of 100% even when she works out. She has a lower heart rate as well. Where her heart used to beat 125 bpm while doing an exercise, now it's 99 bpm. Bill her PT is really impressed with how well she's doing on rehab. For the record, because I keep getting asked: SHE DOES NOT WEAR OXYGEN, AT ALL. She hasn't worn it since she took it off in the hospital on day 6 or so.

One day at a time…a message from Julie's mom

I've been telling myself, 'one day at a time' for so many years now. I've had to attain a certain mindset over the last thirty two years; of doing the best I can today, live in the moment, don't think about the future, trust in the Lord and don't disappoint him. He gave me four very special children and for some reason he thought I was going to see that they returned home to Him. Well there's nothing I want more. So it's always been 'one day at a time' because that's all I could handle. So my point is, 'How can I change my thinking?' It's always been...'Is this the last family picture we'll take?' or 'Is this our last family vacation?' The nice thing about that is I have cherished moments that I otherwise would have taken for granted.

The other night we were in the cafeteria at the hospital and Julie was being her cute self, talking to her Dad and Dave. I was trying to take it all in because she was so beautiful. Julie has another lease on life now. I am having a hard time wrapping my head and my heart around it. I talked to Richard about it and He said, "It's because, it's too big." That makes a lot of sense to me. But how do I trust what's been given to us? It means too much to me to have Julie in my life. If I give into it, will she still be taken away? I would feel so vulnerable.

The fact is, that Julie has been the sunshine on a dark day, and I have I have many of them. Over and over again, all her life she has picked me up. I really don't know what I'd do without her. If ever I knew my Heavenly Father had given me a gift, it was when He sent me my daughter. He knew I would need her.

Like all parents, it's been a great learning experience that I treasure, raising my children. I have always felt extremely blessed. Heavenly Father knows I am a rebellious spirit that takes a long time to catch on. So He knew He would have to kick me in the butt all the way to heaven. I just hope I make it...and He will hold me in His arms and tell me, 'You did your best.'

Julie thank you for the kind words you wrote in the blog. http://www.lungsforjulie.com/2011/03/march-13th-904-am-yesterday-was-special.html
I feel the same way, but you know that already. I didn't mean this to be so long! (I actually had more to say).

With love, Linda

Julie had her first post op. pulmonary function test (PFT) yesterday. She didn't know what to expect. I won't tell you specifics because now she's not drugged and I don't get away with that anymore; but the lead RT from the CF clinic told her it was the highest she has seen from transplant patients. Julie was really excited to hear that especially since she has had to dial back her walking and rehab. Her knee is really inflamed. We think it's something called water on the knee. It could also be some of the side effects of the meds. She is taking less pain meds so she is experiencing some pain. She's determined to get off them. "I don't want to be on them if I don't have to." She said they make her a little sleepy and she'll feel guilty for not being up walking and working her lungs. She felt that way in the hospital too.

Julie had clinic yesterday

They prescribed her lasix to draw off some water. She is much more comfortable without the tree trunk legs that many women know about from pregnancy. Her knee really hurt from all that pressure so hopefully that will go away. She is supposed to eat a lot of protein to assist in the healing process. That being said, she is trying to avoid high sodium foods because of her water retention. They didn't need to do a bronchoscope because Dr. Cahill said her x-ray looked beautiful. She is sore but she seems to improve with each day.It's still hard to believe this all happened. I feel like I did on my wedding day, the day the boys were born just about every day. Life is slipping into normalcy again, so I am really glad I wrote it down as it happened. It is crazy how much you forget.

On Thursday, two days after she got home, Ben started having a runny nose. Now it has been passed on to me. Julie and I pass each other in our home like acquaintances. Since about Friday night I have been on the couch at night and Julie walks around the house with a mask on. We are rounding the corner, so hopefully we get through this without getting her sick. That would be terrible. Jack is starting to get sick so we have about 5-7 more days of this.

March 18th, 2011

Everyday comes with a new challenge. Although I love my pink finger nails, lips and toes, a healthy glow of color in my face and of course having to not wear oxygen, it's also not all a walk in the park. Today in pulmonary rehab I weighed in at 114Lbs. I don't think I have ever weighed that much in my life. I was surprised considering I weighed 106Lbs on Tuesday, but went about my day not thinking to much about it. Later this afternoon Dave, me and the fam went for a ride in the car and before I knew it my ankles started to disappear. I got scared and started to cry. My first thought was the prednisone was making me retain water. I called the lung transplant coordinator to have her call the doctor to confirm that: "it is normal for prednisone to start giving you a moon shape face and pretruding belly." My doctor said she expects this to happen in all her patients and she actually had noticed my face looked fuller in clinic today; so nothing to worry too much about. My initial worry was that my lungs could fill with fluid and it would start to hurt my joints so I would have to eliminate my physical activity. On the brighter side of things everyday gets better, I seem to be moving air through these lungs more easily. I've started thinking of and doing more stuff thats normal, like writing birthday cards and wrapping presents and makeing sure the kids are fed, washed, and not too loud. As for recovery, it's only for a season.