Tuesday, October 18, 2011

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.

Monday, May 30, 2011

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

Monday, May 16, 2011

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!!

Monday, May 9, 2011

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!

Friday, May 6, 2011

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

Friday, April 22, 2011

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.

Saturday, April 16, 2011

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.

Tuesday, April 12, 2011

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:

Tuesday, April 5, 2011

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.

Monday, March 28, 2011

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.

Friday, March 25, 2011

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

Thursday, March 24, 2011

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.

Tuesday, March 22, 2011

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.

Friday, March 18, 2011


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.

1st Walk through our neighborhood without O2



Julie, is doing very well. She is naturally very sore. She feels a little better each day. As the healing occurs, her ability to use the new lungs increases.

Wednesday, March 16, 2011

Home

Julie is home. It's like she never left. She looks great, with good color and high spirits. I had a text from a friend who didn't know about the surgery who saw her today at the UofU from a distance that read "I saw her today and never would have guessed she just had that surgery." Even her PT today told her "You are not the same girl who was post op 10 days ago!"

Tonight, I saw her go to take her oxygen canula off tonight when we were getting ready for bed and said, "Did you just try to take off your ghost canula??" She laughed in her what is currently a weak but cute laugh and said, "Yes. I have been doing it all day." I find myself looking to not kink her tubing in the door when I close doors throughout our house. At 6:00 am this morning when the boys were stirring I wasn't anticipating her walking to the bathroom. Before, her tubing required her to go through our den next to our room and into the hall opening two doors. This always wakes the boys up and since they were one month old, guess who's been getting to take care of them at night and in the morning? THIS GUY. I'm used to it now, but I react the way most moms do when their kids stir too early in the morning or in the middle of the night, I open my eyes wide and at times spring out of bed. My point is, she didn't have to walk that way. She was able to go around opening only one door on the other side of the house from their room and I got to snooze.

This picture was taken with my phone but its a bit of a momento. It's Julie's BiPAP, Humidifier and one of her nebulizers. We can say goodbye to the BiPAP and to this particular neb. We are starting to see the fruits of what many of you call, life. Free from machines and devices (ironically of which I sell for a living). Despite how much these devices and meds have carried Julie, we are glad to be rid of them. After all, what woman wants to look at that mess on her night stand?

Tuesday, March 15, 2011

Discharged

Julie is currently getting her last neb treatment inpatient. We are finally getting out of here. It seems as though ever since they pulled the chest tubes, her progress has been a full sprint. Success doesn't come without pain however. Last night I ended up coming up here around 3:00 am because Julie was in such excruciating pain that the combination of Lortab, Hydrocodone, and iv morphine couldn't even touch. After about an hour she had the thought that it might be pressure from her bowels. Within a few minutes of taking a couple of laxitives things started moving down there and she was able to get comfortable. It's a sober reminder of how much healing still needs to occur.

Julie's CF pulmonologist Dr. Liou was ironically Julies doctor today and as such was the one to discharge her. It is sort of symbolic, its a goodbye to CF centralized care and the opening of a new chapter in post transplant care. The doctor who has seen her since her for the last decade and has helped prolong her life was the one to let her leave the hospital tonight. Julie just said "Maybe James had something to do with that too." The clinicians and physicians who take extra care have so much reward when they see a success. There are so many "debbie downer" situations at the hospital, and as we made rounds to have Julie's lung pillow signed, we saw how much joy it brought people to see her in a relatively healthy state. We are eternally grateful to every doctor, respiratory therapist, physical therapist, nurse, hca, clinicians and hospital staff who have cared for Julie. It is bitter sweet to leave this place. Most would think we would say 'good riddens' but for us its hopefully, see you around, at maybe a restaurant, but not here.

Dr. Liou was very conciencious of people coming to see julie as is her new pulmonologist Dr. Barb Cahil. I am going to make this as clear as Ted Liou did: A nuisance of a bug to you could be fatal to Julie. Please don't come around or pressure Julie to see you if you have been sick, around someone who's sick, or there is any thought that you might carry something. WE HAVE ONLY ONE SHOT THIS TIME. We are so excited about the support and love we have felt through prayers, fasting, phone calls, messages, and emails and hope you will use your best judgement so I don't have to. I am in protection mode as a spouse. Eventually we will have a relatively normal social life but for now, we are hermits.

Monday, March 14, 2011

This is blowing my mind!!

I can't get over how weird this all is. Every time I look at Julie without an oxygen cannula on I am dumbfounded that she is sating so high. I find myself wanting her to check her sats more than she does. She is in the high 90's or at 100% all the time, while my sats are in the mid 90's. What's up with that?? It is so cool to see it happen right before your eyes. To witness Gods hand in your loved one's life is baffling. The way I describe it: It's so cool. No matter what your belief is, It is incredible to watch what modern medicine and faith can accomplish. They are two very interconnected facets of healing. In my opinion, the patient has just as much a role in making this a success as do the physicians and clinicians. They carry out the tasks and procedures, and its up to Julie, her determination and her belief in Christ to see her way back to "normal" life. She said yesterday that she is just a steward for God to show his works here on earth. She feels that it's not her, it's the power of prayer and of Jesus Christ. Anyone who knows her may not think of her as a holy roley in your face Latter Day Saint. However she has a deep relationship with her Savior and has come to know Him through her struggles. It is humbling to be married to her. It is an opportunity of learning. Everything is so black and white to Julie, and yet she somehow is able to stay down to earth.

Julie is looking forward to mundane tasks of organizing her closet or cleaning her house without feeling winded or tired. She is looking forward to playing with her boys and not having to leave to rest. This new life does come with work and challenges however. She will need to stay fairly isolated until they get her blood levels stable for her anti rejection. She is extremely vulnerable in the first 6 months or so. She will go home on some nebulized treatments initially to help with sputum motilization, but ultimately as long as things continue the way they are, nebs will be a thing of the past. She has had a whole life of things getting worse, so for things to continue to get better, is a new thought process. She doesn't want to get her hopes up and have them dashed. For instance, we spoke with another transplant pt. a few weeks ago that after about 2 months got sick. She had to come up to the hospital, get admitted and go back on oxygen. After a few weeks she was able to come back off. We recognize that there may be speed bumps along the way, and we will face those if/when they come, but for now we will ride this wave and enjoy it.

"This day just got better and it was a really good day".


March 13 @ 11.04 PM

Holy crap. Just came back from the bathroom without oxygen and I am saturating 99% on room air. This day just got better and it was a really good day. My mom came with me to x-rays, they were clear so Bill Wong the Cardio Thorasic Surgery PA came and took out the rest of my chest tubes. My mom held my hand the whole time. My Dad and Dave came up and shortly afterwards we went for long walks and ate in the cafeteria. Oh what a joy without the Foley catheter. My Dad told me he wasn't expecting to see me look this good and full of color until after the resurrection. The look he gave me was something spiritual and of pure joy. The amazment in the peoples eyes when they look at me now is something I will never be able to describe. I think many loved ones and friends faith in me has been so amazing. I feel good to know they knew I could conquer such a great giant.

My Mom: A message from Julie

March 13th @ 9:04 AM


Yesterday was a special day. My mom came up to visit me and she shaved my legs for me. I've basically had to take sponge baths to clean myself considering I haven't been able to take a shower from all of the chest tubes and other lines coming in and out of my body. So having my mom shave my legs while I was in bed was quite nice. My mom and I have the kind of relationship where doing something like that so nice and easy. I feel a sense of comfort and sense of being nurtured by her like a daughter naturally would. But I find we have a special relationship where I have really needed her and for that I am grateful. At the same time we have always had a close relationship where I can tell her anything. She has always been so strong and such a great example to me.


Ever since I was a little girl, I have always looked up to my mom. From a small age I always admired her as a woman and how she has always been so feminine. I have always loved everything about her, from her decorative design to the way she wrote with her long pretty fingers. I would even watch the way she would watch movies. I just really look up to her as a person and how she sees the truth so clearly. Her example as a mother has made me want to follow in her footsteps to be the mother that I am.

Sunday, March 13, 2011

No more "jump ropes"

This morning, Julie was dying to get out on a walk. Luckily her mother came up. I spent some time with the boys and went to church. They did a chest xray to see if there was very much fluid in the bottom of the plural cavity on her posterior (back) side. This is where the ends of the tubes are. They enter in on each side of her rib cage just below the breast line and go between the diaphragm and lungs to the back where they drain the most fluid. Julie's xray came back and they decided to pull both chest tubes! This is great news. It is one step closer to home, where she can recover well and be away from all those germs. I was talking to a doctor today at church and he said that is why the protocol is to get her discharged as soon as is safe for her. She is much more likely to get sick in the hospital than in her own home. They also pulled the Foley catheter in her bladder. She is a free woman...sort of. No more "jump ropes" to carry around when she is walking. All she has is her 24 hr infusion of meropenem in her port. We moved it from her central line in her neck to her permanent pic line in her arm called a port. She had me go up last night and access her port since she doesn't trust anyone to do it. I have gotten pretty good at it I must say, but it's the only one I do, and I know her arm by now. It is under the skin so I have to take a needle that has a 90 degree angle to it and hold the port while I insert the needle. Most ports are in the chest just below the collar bone so they don't move all that much when you access them. Hers however is just below her bicep in her arm so it moves around easily. You can only hold it a little bit, so you have to be firm as you insert it. Easier to show you than tell you, so come by sometime and she would love to be stuck just for demonstration purposes.

Julie took the gallon challenge last night to get her bowels moving. It only took 32 oz for her. She's a lightweight. She is a lot more comfortable now and with those chest tubes out I am looking forward to seeing how she is feeling.

Saturday, March 12, 2011

48 hours


I just got home and was with Julie for about 48 hours straight. I actually slept very well at the hospital. Julie had the room cool which is unlike her. Spending so much time with your spouse is really nice. However, I could tell that our true colors were starting to come out yesterday as we started to banter about how to do certain things etc. I had an Art Hendrickson idea that involved art for our wall with some of her equipment. She like any woman was not excited about having something very out of the ordinary on a wall at home. At one point Julie said, I think its time for you to go. I hope you smiled as you read that. We (or I) set it aside and just enjoyed the rest of the night. She won. (I hate that).

I woke up this morning to the Cardio Thoracic Surgeon and his team talking to Julie. They said that her chest tubes are now sort of taking over the job of draining fluid for the body and they are seeing a little less output from the kidneys. They took out a small tube that was sort of in the center of the plural cavity draining near the sternum this morning and hope to take out one or both others tomorrow. I like Dr. Selzman. He is funny about Julie's questions and lightens the mood when it comes to her surgery. The other day she was complaining about the discomfort the chest tubes were giving her and he said, "Would you stop complaining? It's not like you had a major surgery."

This morning Julie and I went to breakfast in the cafeteria. The food there is pretty good and in some cases great. We had a nice hour sitting together. We later went upstairs to get a new meropenem bag for her 24 hour infusion. We were happy to see her bedding had been changed. On our way out there was a code in the room two or three doors down and there were about 30 different clinicians running from different parts of the hospital. Her nurse took the time to stop and tell Julie that she hadn't paged her doctor about a question she had because they were having an emergency. Sounds comforting right? I thought it was nice. Julie said if she were dying she wouldn't want her for a nurse because she took some time to tell us something that obviously didn't take precedence over a code. It was well intended anyway.

I asked Julie if we should loop around the unit (I wanted to know HIPPA information about what was going on with the patient that they obviously needed 30 people to attend to). No joke, there were probably 30 people running to that room over the next 3-4 minutes. Julie said, "Absolutely not! You're one of those people that slows down to look at the gruesome accident while emergency teams are trying to get there! If I'm in trouble get out of the way so they can help me!" You know half of you do it out there. Julie has a better, more humanitarian perspective. Living in hospitals all your life and at times fearing for your life I'm sure changes your perspective. Somehow I think she'd think that way anyway because I can just hear Linda her mother saying the same thing to Rick. Anyone in the health field reading this is happy to hear what she said to me and doesn't like guys like me who want to pry. Hey, none of us are perfect.

The best news of the day is we walked for about 1 hour! She is walking faster and with less dependence on O2. My sats were at 94-95% while hers were the same on .5 lpm of O2. We turned it up to 1 lpm to help with the healing and keep the sats in the high 90's near or at 100%.

The worst news of the day is she has been taking Miralax for a few days and Milk of Magnesia to pass a stool. Today they are changing it to Go-Lightly. Anyone who has had a colonoscopy may know this as the gallon challenge. Its a gallon of laxative to be drank over 6 hours. Yesterday she said, "Why don't we go straight to the good stuff and get this over with?" This will help her to breathe better because the bloating is putting pressure on her diaphragm in addition to the chest tubes.

It's been a week since we had the call. We were here hanging out last Saturday afternoon like any other day. Some reflection later in the next post.