Saturday, January 31, 2015

Happy Anniversary...sort of

On Wednesday, we met with Dr. Cahill, Julie's lung transplant doc and she informed us that there was a possibility that the tumor was a result of having EBV (Epstein Barr).  In that case, there is no chemo and the surgery to remove it is all that is needed. We were discharged from the hospital Thursday morning.  All in all, Julie is recovering very well eating solids Wednesday night and feeling just some of the effects of being intubated (Horse voice, with a little chest congestion).  Her CT scan was clear other than the tumor that was removed.  We had a lot of peace on Thursday even though the looming possibility that we would be undergoing more treatment.  The peace is something I can thank others for.  We have had an outpouring of love and support.  People of all backgrounds have kept Julie in their thoughts and prayers.  As I have said before, she and I can feel it.  It is a real power that we cannot deny.  We may be jaded from the past and that curbs the emotional reaction one might have, but we are still human.  Yet we have been able to really see things as they are in front of us and not dwell too much on what is currently unknown and out of our control.

Yesterday was our 8 year anniversary.  It was met with some preliminary results that were not welcome.  The tumor was malignant and pathology is still determining exactly what type of treatment will be best; We will go to Huntsman Cancer on Tuesday for a consult with an oncologist who works with most all of Cahill's transplant patients.  We were told they will do a PET scan at some point.  PET scan is a little different than an MRI in that a radioactive material (tracer) is injected to see where it collects so the radiologist can see areas of concern with more detail.  Most likely the Lymphoma is Post Transplant Lymphoproliferative Disease or PTLD.  We are still optimistic since the surgeon said the liver was clear and everything around the site looked "clean."  In addition,  her blood is taken regularly to detect cancer and nothing has shown up.  The CT scan done in the ER last Monday was clear. Lastly, the tumor is gone, out of her body and she feels much better than she did.  Frankly, Julie just wants to be able to still go on our trip to Hawaii next month...cross your fingers.

Tuesday, January 27, 2015

Back Again

Just under 4 years after Julie's transplant and we are back in the OR. She has something called intursussception of her bowel that really was at its worst today. (Just google it instead of wondering like I did) However, the fortuitous events of pre-op are worth noting: For one, I was here and not on the east coast stuck in a nor'easter.  More seriously, Julie has suffered on and off from abdominal pain since sometime in November. Today it was at its worst, but we were here at the UofU hospital for a clinic visit. After checking into the ER, an ultrasound, and a CT scan we found out why; The condition had created almost complete blockage. Any longer without intervention and her colon would begin to die. We couldn't have been here at a better time. In addition, we have the same nurse anesthetist as last time, Julie's anesthesiologist neighbor growing up was on service, and the surgeon is one of the top surgeons and academics in his field...again. Sitting in this waiting room alone with Julie's Dad brings back many memories. We went back to the OR around 11:30 pm just like last time.  I was also writing a post titled "To my Twin boys" at this very hour.  That post was much heavier since Julie's life was literally on a thread.

Rewind a few months to November. Julie caught a cold early in the season just after Halloween. It didn't stop her from putting up the Christmas tree the day after Halloween.  She does that just to irritate all the holiday purists out there...ok it's just because she loves Christmas and the last thing she is worried about is what someone thinks of her decorating tastes.  In fact we just got around to taking them down last week. Why do people stress out about that crap? But I digress, she had some lulling pain in her abdomen but she just thought it was part of the virus. As the holidays came and went Julie continued to ebb and flow in her recovery. As soon as she would start to get better, she seemed to catch something again. This is the life of a immune suppressed person. In January she was able to have some pretty powerful antibiotics intravenously to help clear her lungs once and for all from the residual effects the viruses may have caused. Prior to, and during that two week regimen she felt very uncomfortable in her gut. We did various things like break out the triangle pillows to sleep upright, took more laxatives than she normally does, and tried different diets to identify what was causing the discomfort. As the antibiotics started she became nauseous so we assumed they were the sole culprit. Now we know the nausea and stomach pains of the holiday season were in part from this condition she was treated for tonight.

Since I started writing this post, I have had two updates: first one was they were able to do the surgery laparoscopically and not open. This is a big relief. After just over an hour, Julie's surgeon came out and gave us another report. He was very positive. She handled the anesthetic well, had a few small incisions, and they were able to remove the bowel and sew the two ends together. Now it's the waiting game. The cause? A tumor inside her bowel about 4cm (1.5") that caused the overlap or telescoping of the bowel. Ironically on Sunday she said to me, "what if it's a tumor?" Another lesson to always listen to your gut...pun intended. Though she said a lot of things it could be over the last few weeks, it's always good to rule things out and don't just write that patient off as webmd crazy.  She may be onto something.  We should know by Thursday this week of the tumor was malignant or benign.

Aside from all this, life has been unreal for us. I haven't posted because I haven't needed to and we have just simply been enjoying our kids and each other.  Julie gave birth to our beautiful son Charles just 1 year ago; no complications, just 5 weeks early, and little like his brothers. He's now our little buddy and it has been a huge blessing to have him join his brothers. Ben and Jack are in Kindergarten and Julie is on them like white on rice everyday. They handle the pressure to do homework remarkably well. Better than I ever did.

Julie has often recalled that when we were posting years ago, before and after the transplant, she could "feel the prayers of others."  It's a surreal experience to go through for sure. But really, the reasons for posting have always been the same. Keep a record for my boys so they can see their mother's strength and her faith in Christ, and solicit prayers on her behalf. The latter is a selfish approach that I apologize for if it offends. But once again my back is against the wall. We often joke that Julie and I try to think of the riskiest thing we can do, and then do it. Though it is not deliberate that we continue to face some heavy things, we will always rely on any power that we hope and believe is out there. No matter what your belief is, we thank you for your thoughts and prayers. In our eyes there is a real power in them, and frankly it's proof to us that God is real and he hears our prayers. The prayers certainly have not taken bad things away from our lives, but they have helped us see through these problems.  They will not guarantee good outcomes, but we wouldn't know Christ if that's all we were given. We have come to know Him better as we have faced the unknown time and again.  My hope in writing this is it will remind you to remember what you know and you have been blessed with instead of harnessing what you don't know and haven't been afforded.  Thanks again, and God Speed.

Tuesday, November 19, 2013

Uncharted Waters

It goes without saying, but Julie is literally among a handful of Cystics who have undergone double lung transplant and then pregnancy. My job has taken me to NICUs around the country and as I learn about this very complex area of medicine, I am humbled. Neonates are extremely resilient in their fight to live. That being said, it is chilling as I am confronted with the complications of early term births on almost a daily basis. Julie is just under 28 weeks; a critical time for the baby's lung development. As we were looking at some research the other night around delayed cord clamping and other data around pre-term pregnancies and transplant we came across the registry for post transplant pregnancies. It is one of the oldest running studies in medicine. There were only a handful of patients (voluntary registry) that had Julie's situation. The possibilities of complications with an early term pregnancy are enough to get your attention. But to add to it the possibility and reality of rejection; It brought me to my knees. Anyone who has read this blog has seen we are very optimistic and have a "cross that bridge when it comes" attitude. That is not to say we don't get smacked in the face with reality every so often. Luckily so far we haven't been smacked at the same time. We started to have the kind of conversations we have every so often that I imagine a psychologist would be giddy over. I asked Julie about some worst case scenarios with regard to our twins and our unborn son. If she were to reject because of this pregnancy and leave earth in their young life, possibly just a few years from now, the twins would be old enough to remember her, and have to cope with losing their mother. Trust me, this isn't the first time we have had this conversation. If faced with this I asked her if she would have regrets about getting pregnant. Her answer was considerate but concise. 'Its not about that. It's about giving them life, no matter what the obstacles are,' speaking of both our twins and our unborn son. How profound that she sees it as it is. She is considerate of the trial it would be for our kids but not consumed by it. 

The following morning I told Julie I had a hard time falling asleep (partly jet lag) thinking about the risks we are knee deep in. At some point the scripture came to my mind in a still small voice: "Did I not speak peace to your mind concerning the matter?" Without telling her this detail she told me 'Sometimes I think about those things (risks to her graft or the baby) and the scripture "Did I not speak peace to your mind concerning the matter" comes back to me.' I was blown away that a scripture that helped her prior to us getting pregnant among other times was the same one that came to my mind the night before. 

We talked that night before about what life may be like for either of us if the other died. Conversations like this may seem depressing or stressful, but they are just the opposite. We all will be faced with it at some point. I believe in order to truly not worry about what you would do, and 'cross that bridge when it comes' you have to actually have a dialogue around it. We don't talk about it often, but it clearly would come up in conversation because of our situation. Before I married her I thought that I could be faced with this if I married a perfectly healthy girl; with Julie at least I knew somewhat what I was up against. The same types of conversations are had with our boys from time to time. It's amazing to see how they grasp the concept of eternity so easily. We of course do what we can to reassure them, but they are well aware at this point that we all die and we will be with each other again. Around all of this is the age old benefit risk analysis. For us, we have everything to lose if we don't go on this endeavor to have a family, especially if she lives a full life. If the worst comes, we have boys who were brought into this world in part by a fearless mother who has a will to live, and sticks to her principles amidst the strongest obstacles and personal anxiety. That is a legacy they will most definitely draw on throughout their life. You can't pick your poison, so go with your gut, ask God for some kind of confirmation and live your life.

Saturday, September 28, 2013

Take it for granted...

There's a back story to this picture...but before I go into that, let me explain the fact that we posted twice in 2012, and that this is the first post for 2013.  Life has gone on.  We have gotten so used to normal life that we take all of this for granted.  Ingratitude is not what I am talking about; its worry free life, full of activities, the trivial debates of marriage, teaching the boys to ride bikes, poop, ski, play baseball, poop, fish, poop, and the like.  We don't think about the gloomy bridge we might have to cross, its a waste of energy and time.  As we have in the past, we cross them when we get to them, and look around the rest of the time.  Prepare??  You can't prepare for most of the challenges life throws at you because you never think you will have to go through what you end up going through.  So enjoy where you are, and let everyone out there think your life is mediocre so you can enjoy how great it is with the ones you love.

My last post was a bit of a downer.  You have to understand that for about the first year or two we have been figuring out what to get worked up about.  It's different for every patient.  We really haven't had complications since the surgery; a lot of things we could have been stressed or worried about have come and gone.  She had a drop in lung function about 6 months post that was an indicator of chronic rejection.  Since then however, Julie has been stable, which is contrary to the very definition of chronic rejection.  In reality, nothing changed anecdotally when it came to how she felt.  A few test results changed, but that's it.  We decided to just be positive and move on.  One of the reason's we can let life go on is Julie's incessant attention to her vitals.  To this day she takes them morning and night with every attention to changes documented for clinic visits about once every month or two.  This attention to detail is a big contributor to her success fighting CF before the transplant, and her health now.  It bothers her when we are out of town and she isn't able to check her blood pressure.  I am so grateful for her compliance with her drugs and attention to details, because if it were me, I'd get complacent.

The back story to the above picture, is it has been on Julie's mind since she was a little girl; to not only be a mother, but to have a baby.  As she grew into her 20's and became sicker than she ever imagined but was always taught to expect, this dream of having a baby waned.  In 2008 we were given the Ultimate gift by my sister Aly carrying our baby boys for 7 months before they were born prematurely.  To add insult to injury for her (pun intended) Aly offered to pump for us for 6 months.  To be clear...JULIE's egg, MY sperm to form an embryo to be placed in vitro into a surrogate.  I can't tell you how many people out there haven't understood that concept.  Utah can be a weird place, but definitely not that weird.

Conventional wisdom would tell you to call it good here right?  We have a family with two beautiful boys, my wife's life has been extended for anywhere from 5 to 50 years, so why on earth would we have another baby?  There is so much at stake, so much to lose, for us and for our boys.  My question to you is, Do you live life around statistics?  Or do you live life around calculated risk taking.  We all see things differently and make our own choices that we have to live with.  Had I married a completely healthy woman, would I consider the rates of divorce, chance of losing a child to an accident, or disease before we decided to have children?  Maybe the answer for some out there is yes; but for us, that is no way to live.  The reality around this is Julie had it in her mind that she was born to be a mother.  No amount of reason or rationale could stop her, except in the case of high known risk.  Prior to the transplant, we knew how risky it was for her to carry a child, so we looked at other options from day one.  Post transplant there are still huge risks, but they are far more unknown risks; there aren't a lot of women of child bearing age with double lung transplants, CF, and CF related Diabetes.  There really aren't any case studies on such a specific patient.  So in the end, you can't always go off of data analysis and studies, you have to go with your gut.

The first week after transplant, Julie asked Dr. Cahill when she thought she could have a baby.  Without even skipping a beat Dr. Cahill said "Don't ask me that again for a year."  Our one year mark came and went and Julie began to grow inpatient.  We scheduled an appointment with the transplant clinic to specifically talk to them about this.  Julie was hoping to talk to Dr. Cahill since she had spoken to her originally about her desires to have a child.  I was grateful for what came to follow; Dr. Raman, her other physician spoke to us.  It was a very candid, and blunt conversation.  He spoke to us about our boys and about what a decision like this could result in, suggesting surrogacy or adoption instead.  Julie left in tears of discouragement.  There were a lot of "come to Jesus" talks between Julie and I and Julie and her physicians.  This decision was not  blind ignorance of the truth on Julie's or my part.  She took the risk very seriously and considered adoption, surrogacy, or not having a child at all.  I was in a position of stupor.  I wasn't against having another child, but I had come so close to losing Julie before, that my normal optimism was stifled.  Julie was on line reading journals and studies, and blogs (don't believe what you read in blogs;) and Mayo clinic and pub med; the list goes on and on.  She was looking for any information she could find.  She didn't want to be cavalier with what she has been afforded and what she felt deep down we were about to do.

An appointment was made with Dr. Silver a high risk OB at the UofU Hospital.  The meeting with Dr. Silver was spawned by Julie connecting to another double lung transplant patient who has had two children post transplant.  They talked about how it went, adjustments to meds, complications, and so on.  As with Julie's transplant surgeon, Dr. Silver put her worries at ease the moment they met.  These two instances came to Julie as answers to prayers.  They were the perfect demeanor for Julie; A surgeon who was confident but not cocky in Dr. Selzman, and an OB who was laid back but calculated in Dr. Silver. In the end, the person considering the risk the most and stressing about it wasn't her doctor(s) or me, it was Julie.  Once she had that meeting with the high risk OB, another appointment was made at the Transplant clinic.  Dr. Cahill came in to talk to her about her decision.  We were both surprised by her approach.  She said something to the effect of 'We didn't transplant you to tell you how to live your life, we transplanted you so you could live your life.'  Julie asked her "Would you support me if I decide to get pregnant?"  "Absolutely" she said.  It was as if the entire weight of the unknown was lifted.  Dr. Cahill was very supportive and almost anticipating it in the months to come.  A few different times she would say "lets draw your blood for a pregnancy test."

As we came into the fall and continued to try, we decided to go to back to the infertility clinic in research park at the UofU.  We found out Julie had stage 4 endometriosis.  This wasn't the double wammy, it was the quadruple wammy.  I began to wonder if we were forcing the issue.  It was a source of stress in our marriage as many people can relate to.  Julie was unwavering though.  Despite being detached at times, I found my self jumping on the wagon with her and reminding her of certain priesthood blessings she had been given throughout her life, and all the specific answers to prayers we had received in the past.  We couldn't get our heads around why we were going through yet another road block; we had to focus on what we knew, and what we had experienced.  As soon as they told us the results and suggested laproscopic surgery, she said, "let's do that."  In December she had the endometriosis removed and we were trying IUI (artificial insemination) the following months.  After trying 3 times we began to talk about IVF (in vitro) again.  I had just been promoted and it was requiring a lot of initial travel.  I remember being in Irvine at my office on the phone with her.  We were talking about doing IVF the following month as the doctor suggested and foregoing a 4th try at IUI the following week.  We were coordinating my travel schedule.  We decided to break up my trip that following week and go ahead and try a 4th time.  For anyone who has had to go through the process of having a baby the non-traditional way using modern medicine, you can relate.  For the rest of you, it's full of surprises and it's not usually on your schedule, even if your wife has a regular cycle like Julie does.   Once she starts ovulating, you have to be at the clinic the following day, sometimes the same day to have the procedure done.  She was supposed to start ovulating on Saturday night.  I was flying out on Tuesday morning to Seattle.  Saturday came, Sunday, Monday...she still hadn't started.  I had changed my trip to Seattle to a day trip instead of connecting to my office in Irvine that night.  I came home in time to put the kids to bed.  She still hadn't started ovulating.  After a few episodes of Lost she started ovulating around 11:00 pm.  I had a flight out to Houston the next afternoon.  We called the clinic first thing in the morning, went to the procedure, and I was on my way that night for the rest of the week.  We fit it in an 18 hour block of me being home.  It just all fell into place.

The next month when it came time for her to start her cycle, she was delayed.  At first she wrote it off to a late ovulation cycle.  You sort of get used to not getting pregnant when you try for months and sometimes years.  I was out of town again for an entire week.  She was supposed to start over the weekend while I was home.  I called her every night asking, hearing that well anticipated, "no, not yet."    I came home on the weekend and she was something like 8 or 9 days late.  She had bought a pregnancy test earlier in the week, but wanted to wait till we were there together.  I got to her parents second home in midway late Friday night.  She had read somewhere that the test is more accurate in the morning since there were more hormones in the urine after sleeping.  She wanted to wait so that she would not get a false positive.  Talk about self control right?  The following morning at 5:00 am she took the picture at the top of this post.  I laid in bed expecting a shout of joy or a scream, but in true Julie fashion, I had to get out of bed and walk into the bathroom.  "Look" she said as she pointed to it on the counter, "Cool, huh?"  "Yeah, that's pretty cool.  I knew it.  Your freaking at 39 days since the start of your last period!"

The boys are very excited to be big brothers.  When we asked them to guess what was in mommy's belly, one said a dinosaur, and the other said a baby iguana...this is before any ultrasound pictures.  When we found out the sex at 16 weeks, Julie couldn't stand to wait and plan a reveal party with invitations like she normally would.  She immediately planned something for our parents and grandparents the following day.  We baked a blue circular cake, she tried to frost it when it was still warm and it fell apart.  She called me up to help her out and we cut it into a square cake.  We had about a dozen people over one Sunday for that party.  Of the 12 or 13 people there, only two guessed it was a boy; Ben, and Julie's mom.  Jack wanted it to be a girl so we could name it Sally after Lightning McQueen's girlfriend.  I think his first crush is a car...but that is actually somewhat normal.

It has been a very normal pregnancy, with bloating, and weird pains lately on either side of her belly as her ligaments stretch.  She didn't deal too much with nausea probably because she has so many measures to prevent it already.  She has been tired at nights, and cleaning like a banshee.  They say nesting doesn't occur till the end, but she is using that as an excuse to whip me around every weekend.  I love her.  I couldn't ask for a better pain in the neck to be married to.  She makes me a better man and I'm lucky to have her as long as she can be here.  Be it 2 years or 50, we are grateful.

Friday, June 29, 2012

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.

Monday, March 5, 2012

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!   

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!


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 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 NINE, Oxygen hung up.


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!