Surviving

8 Dec

Christmas tree shopping

I can hardly believe we’re entering the second week in December.  I think I’m going to blink and realize that Christmas has come and gone.  Last week we went out and bought a real tree (which we had approved by the transplant team).  Pre-transplant, the cold weather was very bothersome for Jody.  As soon as he breathed that cold air into his failing lungs it caused his chest to tighten and elicited lots of intense coughing.  So much so that sometimes it even caused bleeding in his lungs.  Last winter I dreaded every time he stepped outside.  Few things scared me like the site of him coughing up bright red blood, standing helpless, waiting and wondering if and when it would stop.  People with CF have died from this alone; it can be very serious.  I used to tell Jody to wrap a scarf around his mouth and nose, I’d tell him to go straight to his seat (I’d buckle the girls into their car seats), and sometimes we’d even use his handicapped sign to park close to an entrance so he had less exposure to that cold air.  Often he needed to do an Albuterol nebulizer treatment after being outside to help open up his airways, relieving some of the chest tightness.  There are so many things we take for granted in life, like being able to go outside and breathe comfortably and effortlessly.  This winter is going to be different.  While I’m scared of the fact that it’s cold and flu season (and I’ve been warned that Jody could be admitted 10 times this year for various bugs and infections), I feel such peace knowing that he can walk out the door and breathe well.  No longer do I fear him coughing, no longer do I dread the site of blood spilling from his mouth.  It’s odd to not hear his cough anymore… but it’s wonderful too!  All that to say, aside from being cold, our hunt for the perfect Christmas tree went well; no oxygen, no shortness of breath, no coughing, no blood, and one perfectly green, perfectly fragrant six-foot Fraser fur.

Jody continues to make great progress, and his PFT’s are still climbing.  Last week at clinic he was up to 85.4% lung function.  Oddly, just two weeks after being lectured for driving and told that he wouldn’t be allowed to drive for six months, he was given the okay to drive again.  We don’t pretend to understand what changed their minds, nor do we question the decision since Jody feels ready and it will make our lives easier to have two drivers in the family again.

I have been back to work for about 2-3 weeks now and it has not been easy.  People ask me all the time how Jody is doing, and I appreciate that, he’s been through a lot and deserves to know that people care about him.  Unfortunately, that’s normally where the conversation ends.  Very few people ever think to ask how I am doing, really doing.  These past three months (nearly) have been anything but stress-free.  We’re finding that Jody has very little memory of his five weeks spent in the hospital which, for him, is probably for the best.  I on the other hand have full recollection of it all, including things that I have chosen not to share on my blog.  I’ve had very little time to process all of this as I have lived on survival mode.  The weight of ‘single’ parenting, care giving, working to provide for my family, housekeeping, chauffeuring, arranging babysitters and doctors appointment after appointment are heavy upon my shoulders.  Nearly every day off work is spent at some kind of appointment.  I have adjusted my work schedule when I can, working all kinds of shifts to lessen the need for sitters, at the expense of sleep.  Work in and of itself has been stressful lately with census surges and less than ideal staffing.  Jody and I have had very little quality time together since transplant and I’ve spent little time with friends and doing the things I enjoy.  All of this has taken its toll on me.  This entire experience, including the two years leading up to transplant, has certainly changed me.  I’m overjoyed with how well Jody is doing with his new lungs and words can’t describe how thankful I am for this gift, but just as it’s been hard on him it’s been hard on me too.  I’m dreaming of a relaxing vacation, just he and I, where the ocean is clear, the sand is white, and his scar is faded.  It will be a long time until this dream comes to fruition but I trust that one day it will, after all, isn’t that the point of this transplant, to enjoy life, to make dreams come true?  We may not be reaping the full benefits of Jody’s new lungs yet, but I know we will.  I know that my stress level will decrease, and one day (hopefully soon), life will be ‘normal’ again.  Until then, I continue to put one foot in front of the other and press-on.  Just like Jody, I’m a survivor!

Years Restored

22 Nov

Jody is doing well.  Really well.  On November 15th he reached the two month mark, and I have to say, his new lungs are downright awesome!  Each week at clinic his lung function continues to climb.  This past week he was at 81.5%!  I can hardly wrap my brain around this considering a few short months ago he was down to 22%.  Can you imagine what that must feel like?  Recently I looked at my records of Jody’s PFT’s from when we started dating 10 years ago (yes, admittingly I do have 10 years of records in my file cabinet).  In 2004 his lung function was hanging around 75%.  Through the next ten years he experienced a slow and steady decline until his lungs nearly gave up here in 2014.  One night in surgery erased 10 years of damage.  It’s crazy!

Pulmonary rehab is going well and Jody is definitely becoming more active.  In fact, this past week in clinic he was reminded not to overdo it because he has a very thin wire holding his chest together right now.  Jody has a transverse sternotomy incision which means they cut his breastbone in half horizontally instead of up and down.  This provides greater access for a lung transplant surgeon than the traditional (vertical) sternotomy.  I searched online to find a photo of this to give you a visual and this is the best one I could find (sorry it’s a little blurry).  On x-ray you can see the bow tie-like wires holding Jody’s sternum together until it heals.  Until that time he continues to have lifting and stretching restrictions.

Speaking of restrictions… two weeks ago his transplant coordinator gave us the impression that he could start driving when he felt up to it, and recently he did.  After two months of me, and only me, at the wheel it was great to have him back at it… he could drive himself to rehab.  At clinic this week he was given a lecture about having started driving and told that he wouldn’t be cleared to drive until six months out of surgery.  The coordinator (who seems to call the shots) did correct the doctor and say that it wouldn’t be that long.  It was frustrating to be given this gentle scolding when just two weeks ago Jody was told that he would know when he felt ready to get behind the wheel.  Perhaps they should have clarified that just because he felt ready didn’t mean he was ready.  So now we’re back to me and only me behind the wheel.  This is complicated because I am back to work, Jody has rehab three days a week and our youngest daughter needs to get to and from preschool three days a week.  Jody’s clearance to drive couldn’t come soon enough.

One thing Jody’s new lungs allowed us to do recently was to celebrate our youngest daughter’s fourth birthday.  We didn’t do anything fancy, just the four of us here at home, DSC_0308Ain fact, I didn’t even make a cake, I bought one (gasp).  Most of you know that one of my favorite things to do is make/decorate fun birthday cakes for our girls but this birthday I decided I didn’t need the added stress.  Piper, forgive me, I promise I’ll make it up to you next year.  The cake I asked the bakers to make turned out cute and she probably didn’t even care that it wasn’t made by me.  Do you remember this post, ‘Thank you, transplant, for waiting two more days?‘  I guess I could have titled this one, ‘Thank you, transplant, for this day.’  I’m so glad our daughter didn’t have to celebrate her birthday without us.  The hope of this transplant is that Jody will thrive, beating the statistics of lung transplants just as he beat the odds stacked against him so many years ago when he was diagnosed with Cystic Fibrosis.  Hopefully he will be around to celebrate many more birthdays.

One final note, our family received some sad news this week that Jody’s Mom, Sharon, was diagnosed with colon cancer.  She has an appointment with a surgeon in two weeks and until then we are left with very little information on the staging of her cancer and the treatment plan.  We know she will have surgery on December 10th and we appreciate your prayers for that.  Thankfully I am off work that day so I can be there for her surgery.  Pray that God would fill her with hope and minimize the negative thoughts that come with every cancer diagnosis.

Thanks for continuing to follow Jody’s Journey.

‘For I will restore you to health and heal your wounds,’ declares the Lord…

Jeremiah 30:17

Two Down, Ten to Go

9 Nov

All things considered, Jody had a good week.  He’s eating well (many thanks to the people bringing delicious meals), he gained a pound, and he was even a little more active at home. On Monday he had a local speech therapy session where they taught him additional exercises to strengthen his swallowing muscles.  It seemed kind of pointless because he had already been practicing the strategies he learned while in the hospital and on Wednesday he completely and totally passed his sixth swallowing study.  He no longer needs to use his adult ‘sippy’ cup, he can drink without fluid restrictions, and he can eat foods of mixed consistency (like cereal with milk, or soup).  At this point he is still taking his pills with Jell-O or pudding, but he’s been cleared to take them with water, just one at a time.  Jody was very excited to have passed this test.  I’m glad too but feel a little cautious after everything we’ve been through.

At clinic on Wednesday Jody’s PFT’s were 73%!!!  One week ago they were 64% and the week before that they were 50%.  It’s mind-blowing!  This past year watching Jody’s PFT’s had become something I dreaded, they were so disheartening, and a little too much reality that his lungs were failing.  Now, with two healthy lungs which are getting used to their new home, his PFT’s are not so depressing.  In fact, they’re actually uplifting.  Watching those numbers climb is confirmation that transplant was worth it. We hoped for this.  We prayed for this.  It hasn’t been easy, but we thank God for this gift.  There is a reason people refer to organ donation as ‘the gift of life’… because it is… truly.  I may not speak of it often, but we have not for one day forgotten Jody’s donor and his/her family.

Also at clinic this week Jody lost his metal!  If you’re not following me, I’m talking about his staples… all 67 of them.  After seven weeks his incision had healed well enough and the staples were ready to be removed.  It was simple and painless, and now he has one less (or 67 less) things on his body that don’t belong there.  The day he gets his feeding tube and central venous catheter out will be another day to rejoice.

Because Jody was not on enough medication (enter sarcastic tone), he was started on five new meds this week.  The most notable one is a medication to lower his blood pressure, which has been elevated as a result of his immunosuppressants.  To help with his high blood sugars we’ve started giving him four extra units of insulin on top of the sliding scale at breakfast, lunch, and dinner.  Remember that unlike ‘normal’ diabetics he doesn’t need to limit his sugar intake (because of his Cystic Fibrosis).  For now this increased insulin seems to be working.  Jody was not diabetic before transplant and it is still possible that once his Prednisone dose is tapered down (currently he is on 17.5 mg), his sugars might improve.  However, this could also throw him into full-blown diabetes.  Time will tell.  Obviously our hope is that he will not be diabetic for life.

As you may have noticed, there are so many side effects to the medication Jody is required to take.  I just mentioned high blood pressure and high blood sugar, but it doesn’t stop there.  The Tacrolimus causes his hands to shake noticeably.  Our oldest daughter has asked more than once, “Daddy, why are your hands shaking so much?”  These shakes even render his handwriting illegible.  We are told that with time his body should adjust to this medication and the shakes may be less.  Jody still has blurred vision (although not nearly as bad as in the hospital), and this past week we noticed his speech was off.  When we mentioned the speech thing at clinic the team didn’t seem to have an answer for it or to be concerned by it.  Anyone who knows Jody can pick-up on it pretty quickly.  It’s hard to know what could be causing it if it’s not a known side effect of his medications.  I guess we’ll just keep an eye on it and pray that it resolves with time.

Friday Jody started his first pulmonary rehab session.  This is done locally and actually he was doing this at the same center pre-transplant.  Then it was to preserve the lung function he had, now it’s to improve it and get him back into shape.  Pulmonary rehab is basically guided exercise.  Jody is very deconditioned right now so he is looking forward to rehab and the strength it will give him.

There are plenty of moments when Jody or myself are frustrated that things are not moving along as fast as we would like them to (even though we know he has come a long way).  Usually this happens when he would like to be doing more or when I wish he could do more.  I was thinking about this the other day and realized that because we have been talking about a double lung transplant for so long, it’s become the norm to us and has lost the wow factor.  Don’t get me wrong, it’s still huge and we know it, but sometimes we forget just how huge it is.  It’s not until I tell a complete stranger and watch their eyes grow large, and hear, “Oh, wow!” spill from their lips.  It’s not until I hear the lead anesthesiologist who was in the OR with Jody (1 of 4 who were there) say that a double lung transplant is the hardest thing for an anesthesiologist to perform, “By far harder than a heart transplant.”  It’s not until I hear from a transplant coordinator that a lung transplant requires higher doses of immunosuppressants than any other transplant performed today.  And this week, it was when the transplant doctor said that it takes ONE year to fully recover from this surgery that I was once again struck by the magnitude of it.  We have been told this before by other lung transplant recipients but this time it really hit home.  In this day and age people have major surgery, go home a few days later (if not the same day), and are back to work a few weeks after that.  When I hear that it takes ONE year to recover from this three and a half hour surgery, I become that wide-eyed person, appreciating the greatness of it and I too utter, “Wow!”  When we remember this, we embrace the progress Jody has made already and know not to rush his recovery.  A year sounds like a long way off when our lives have already been on hold for a year, but what’s another year when he has the rest of his life to live after that?  Sometimes I feel that people think that since Jody is home all is well and that transplant is done.  As you can see, the surgery is complete but this is far from over.  Two months down, ten months to go…

First Post-Transplant Clinic

31 Oct

Wednesday we traveled back to Hopkins for Jody’s first post-transplant visit in the Transplant Clinic.  For now this will be a weekly occurrence with the goal to gradually increase the space between appointments.  As I mentioned in my last post Jody’s first week at home was a rather miserable one as he dealt with painful abdominal cramps and bloating which made eating difficult.  These symptoms were the result of a bowel obstruction.  There were so many possible causes for this: Narcotics, dehydration (for so much of his hospitalization he was on severe fluid restrictions, both oral and IV), too many CF enzymes (since he has lost so much weight-now down to 105 lbs, his enzyme requirements are less), and CFer’s in general are prone to obstructions (although it’s never been an issue with Jody in the past).  There are other possible causes as well.  At this point we didn’t care so much about the cause as we did getting it fixed.  For two nights Jody did GoLytely, a type of bowel prep that is often used prior to a colonoscopy to clean out a persons system, so to speak.  When this failed to work we knew he needed something more invasive.  A barium enema was added as first on our list of things to do on Wednesday.  This basically includes filling the colon with a special liquid (barium) so that it becomes visible on x-ray.  A blockage can then be identified and hopefully broken up.  Jody was definitely obstructed but thankfully the procedure worked to fix it.  Immediately after the procedure we went to eat lunch and he ate more than he had all week and the best part was that he didn’t have that painful cramping in his abdomen as a result.  He’s been eating and pooping ever since, and it’s great to see him feeling better.  Hopefully this (obstruction) won’t be an ongoing issue that he has to deal with going forward.

The rest of our day long but was rather uneventful.  Jody had a chest x-ray and then his first post-transplant hopsital PFT’s (pulmonary function testing).  He now has a machine at home to check these twice a day and we were anxious to see how the home machine correlates with the hospital machine.  The numbers were surprisingly close.  His lung function this day was 64%!!!  When we left the hospital a week prior he was at 50%.  This number is expected to continue climbing and we’re told usually peaks between 6-12 months post transplant.  I still can’t believe how easy Jody makes this testing look compared to a few short weeks ago.  Even the tech who performed the test commented on how neat it was to see him walking in there, no oxygen, and able to do the test so effortlessly.  Can you imagine how ‘easy’ it will be for him as his lung function increases?  I’m so in love with these new lungs of his!

Post-transplant PFT

In clinic we met with Jody’s transplant coordinator and the doctor.  Jody’s primary transplant doctor also happens to be a CF doctor (one of the few who works both CF & transplant) so it’s been neat to see him through the years as one of Jody’s primary CF docs and now his primary transplant doc.  At his appointment we reviewed his extensive medication list and made some changes.  We reviewed all the home self-monitoring data we’ve been recording (vital signs, weight, PFT’s).  They checked out his incision and all the healing sites where tubes and lines were removed.  Dr. M listened to his lungs, smiled and said, “You’re lungs sound SO good!”  Those words seem so foreign after years and years of unclear lung sounds.  It’s music to our ears.  Jody’s x-ray did show that he still has inflammation and fluid in his lungs (we knew this when we left the hospital) so hopefully this will resolve on its own.

Jody’s been having a hard time sleeping at night because he needs to stay at a 30% angle.  He has pillows propping him up so that his shoulders stay upright but it makes it hard to change positions at night.  It’s also hard for him because he is not normally a back sleeper.  He wakes up with back and neck aches.  Some nights he even sleeps half of the night in bed and the other half on the couch.  I never quite know where he’s going to be when I wake up.  Jody talked to the doctor about this in clinic but they hold firm to the fact that he needs to sleep upright to prevent another aspiration episode (even though he doesn’t eat for over three hours before bed).  I’m going to order Jody a wedge pillow I found online to see if that helps.  Jody has thought about buying a recliner chair but that doesn’t seem like a reasonable long-term solution; we’re too young to sleep in separate chairs beds.  If this is a lifelong thing we may need to break-down at some point and order one of those mattresses that sits up.  For now I hope the wedge pillow will work, obviously that’s the easiest and cheapest solution.

The last two days have been much better than all the previous days at home.  It’s been great to see Jody eating again and not paying for it afterwards.  Speaking of food, many of you have asked how you can help, and here is one way you can bless us.  Our friend Kendra has kindly set up an online meal schedule for us.  Meals are so wonderful, especially for me, so I don’t have to worry about cooking in addition to taking care of Jody and our girls.  When I go back to work I know they will be even more helpful.  If you are interested in bringing us a meal you can CLICK HERE to sign-up online.  Thank you to those of you who have already signed-up or brought a meal, you don’t realize how helpful this is to us, and we are so very grateful.

 

Updates from Home

26 Oct

Jody has been home from the hospital for five days now and we are settling into a new routine.  I have three weeks off work and while I’m thankful for that, it doesn’t seem like nearly enough.  I remember the transplant coordinator at the hospital telling me to be sure I was rested and ready for discharge because it would be “all you (me) at home” taking care of Jody.  I am surprised at how much time post-transplant caregiving takes (that and being Mommy).  Twice a day Jody has a number of self-monitoring tasks he needs to do and record, such as weight, vital signs, lung function testing, etc.  DSC_0346AHe has an extensive medication regimen that begins at 8am and concludes at 10pm (see photo on right of all his oral medications).  He also has a number of intravenous (IV) and inhaled medications.  It is so weird to me that his entire medication list is new (as in, he no longer needs most of the CF meds he’s been on for as long as I’ve known him). It feels like everything I’ve learned in the past 10 years about Cystic Fibrosis is thrown out the window and now I’m learning an entire new beast called ‘lung transplant.’

At discharge we sat down with a pharmacist and Jody’s transplant coordinator to review his meds and fill his first pill box.  We were given an eight page chart full of medications to guide us with what to take and when to take it.  This first week I gave Jody a ‘free pass’ and I took responsibility for giving him all of his meds at the appropriate time.  Next week we will do it together and the third week he will do it by himself while I watch.

I learned a few things this past week, one being that the pill box provided by the hospital was not working (at least for me).  There were not enough slots in a day to accommodate the numerous times he needs to take meds.  For instance, all morning meds were lumped into one slot even though they are taken at different times throughout the morning.  After an unsuccessful Google search for a six-slot per day (or more) pill organizer, I decided to get creative and make my own.  I bought two seven-day pill boxes with four slots for each day.  I flipped the boxes on their side to make the seven-days become seven-slots (per day).  DSC_0376Now I can label the specific time Jody needs to take his meds and I even have an extra section for PRN (as needed) drugs or Jody’s digestive enzymes.  I realize that pill boxes are not exciting reading material so please know the only reason I share this with you is because there are a number of pre and post transplant readers of my blog who might find this method helpful for them as well.

In addition to medications, Jody also needs to check his blood sugar four times a day and often requires insulin coverage (he will most likely develop full-blown diabetes as a side effect of some of the medication he is taking for his lungs).  One thing that is odd about this is that because of his Cystic Fibrosis, which still affects his GI system, he doesn’t need to limit his sugar/carbohydrate intake.  As a result, he can eat things most diabetics would need to avoid, although it does cause his blood glucose levels to rise significantly.  It’s hard for me to understand this balance or lack thereof.

On the day of discharge Jody had swallowing study #5 done.  If you remember, the week before he was given permission to eat again, but wasn’t allowed to drink thin liquids.  At this test they did clear him to drink regular liquids but he must tuck his chin down to his chest to swallow.  He is still experiencing laryngeal penetration where the liquids go down into the larynx and are stopped by the vocal cords from entering into the lungs.  He was given a special cup to use for liquids because it only allows him to take in 10 mL of fluid per sip.  I lovingly refer to this cup as his ‘adult sippy cup’ because that’s just how it looks.  This cup prevents him from taking in large volumes which would most likely make their way past the vocal cords at some point.  After everything we’ve been through another aspiration episode is the last thing we need.  Jody also can’t eat foods that are mixed with liquids such as cereal or soup, like vegetable.  Additionally, to prevent aspiration he needs to sleep at a 30 degree or more angle. Propping pillows and not being able to change positions at night has been difficult and uncomfortable for Jody. He is waking up with back pain as a result. We’ve heard mixed talk about the follow-up plan regarding his swallowing issues.  He might need speech therapy to give him exercises to strengthen his swallowing muscles or they might just wait and repeat another swallowing test (yes, #6!) after he’s been eating on his own (which could in itself fix the problem).  For right now Jody is really glad to be able to drink again, even if it is just 10cc’s at a time.

At this time Jody is not allowed to be left alone.  Because he is immunosuppressed, and we are in cold and flu season, we continue to be careful about germs and exposing him to outside people.  It’s hard to know when and how to let up on this.  As far as I am concerned, for the first time in five weeks I am mask-free!  This is both liberating and terrifying at the same time.  I often wonder if I will ever kiss him without fear of killing him by spreading some bug I may not know I have.  I realize everything is quite fresh right now and that I will probably relax about it in due time, but for now the fear of germs and bugs is still very real.

I wish I could say we’ve been living it up here at home and having the time of our lives, but it simply wouldn’t be true.  While the routine is going fine, Jody has not been feeling well.  He has spent much of the week sleeping and is having a lot of intermittent yet intense abdominal pain.  Eating makes the cramping and bloated feeling worse, not eating is causing him to lose weight that he shouldn’t be losing.  It’s hard to encourage him to eat, knowing the pain it will cause him, yet its hard to see the skin hanging off his body knowing it will only get worse if he doesn’t eat.  It wouldn’t surprise me if they start using his feeding tube again for extra nutrition but Jody is strongly against this.

Bowel obstruction could be the cause of all the abdominal pain Jody is experiencing.  Today the doctors called in a prescription for him to do a colonoscopy-type bowel prep that should clean out his system completely.  Tonight he is feeling a little better but he also hasn’t eaten so it’s hard to say if the clean-out worked or if its his empty stomach that has him feeling a little better.  This has been an ongoing issue for Jody and it is very frustrating and overwhelming for him.  He has had moments where he sincerely wondered if all of this (transplant) was even worth it.  I know that deep down he knows it was, and that he will get better, but we (you and I) can’t belittle how hard this major surgery was on him (and anyone else going through it).  It’s so much easier for me to say, “Of course it was worth it!!!” because I’m not the one experiencing it first hand.  For this reason I chose to stay quiet, but it didn’t keep me from shouting those words in my head.  I know that in his heart Jody knows transplant was worth it; he’s got a wife and two little girls to live for and to watch grow into young ladies.

Speaking of little ladies.  On Tuesday our family of four will finally be back together.  Our youngest daughter had a recent live vaccine so she wasn’t allowed to be in the same house as Jody for a two-week period afterwards.  It turned out to be a smooth transition to home only having the oldest with us because she is in school for eight hours a day, and is also a little more independent.  I’m excited to have everyone at home under one roof, but I’m not gonna lie, I’m a little nervous about it too.  Please pray that God would give me an extra dose of patience and that things would go smoothly.

We will be heading back to Hopkins for transplant clinic on Wednesday.  This will be a weekly thing for the time being but the visits will gradually be spaced further apart.  Hopefully by this weeks appointment Jody will feel better and won’t need to stay; that possibility is never very far off.  Please continue to pray for Jody’s ongoing recovery and especially for the GI issues he’s been having.  Your words of encouragement do wonders for the soul.  It is so touching to know that people (still) care and so I hope you will take the time to continue uplifting Jody with your words/comments.  Until next time… thank you for reading.

Big News

21 Oct

I realize it’s been over a week since I last posted about Jody and I apologize.  My laptop battery charger stopped working so the battery died leaving me unable to blog.  I left the hospital Sunday for work so I picked up a new charger and am now back in business.  I just read over the last post I wrote about Jody so I can update you from that point.

Jody’s breathing is doing great!  On chest x-ray his lungs are still recovering from the infection that hit them so hard but clinically he is feeling good from a breathing stand-point.  He has been off all oxygen (with and without activity) for over a week.  Actually, sometime this past week they even took him off the continuous O2 monitoring.

On Saturday they delivered the PFT machine that Jody will use twice a day at home to measure his lung function.  Prior to surgery Jody’s lowest lung function (recorded) was 22%.  From the time we started dating, nearly 10.5 years ago, I have gone with Jody to his doctors appointments and watched him perform these pulmonary function tests.  About three months before surgery I stopped watching; it was getting too hard. He would take a deep breath, blow out the air as fast and as hard as he could, giving it his all, and the results would be so disappointing.  His face would turn as red as can be, the veins in his neck bulged, and the coughing it brought on was torturous to hear.  His inability to do something so natural…breathe well, was heartbreaking.  I couldn’t sit there and watch it anymore.  So, for the first time in 10 years, I began staying in the waiting room until the test was complete.  By the time I saw him he was recovered and I could pretend he never had the struggle.  On Saturday when Jody tried out his home PFT machine, his lung function was 50%!  This number is expected to climb through pulmonary rehab and as his lungs recover from his infection.  Even better than the 50% is that the test seemed effortless.  His face didn’t turn red, his veins didn’t bulge as before, and instead of five minutes of intense coughing, he didn’t cough at all.  It was an emotional time for the both of us as we realized once again the implications of this gift of life he’s been given.

Since I last posted, Jody’s main issues have been GI related.  After having his feeding tube revised he started complaining of abdominal cramps, bloating, and nausea.  At first it was blown-off by the staff but as it grew in intensity they started to take him more serious, ordering an abdominal x-ray and CT scan.  When Jody had his ‘J’ tube revised the doctor told me that he didn’t know how the tube had moved in the first place, and noted, “It should never move (into his stomach) again… and if it does… I’ll eat my shoes.”  Well guess what, he needs to eat those shoes of his.  Just two days after Jody’s revision (and possibly sooner, we can’t know) the tube was back up in his stomach and this time, all coiled up.  They planned to revise it again but Jody was persistent that he wanted it out.  Because nutrition has been an issue (he’s down to 109 lbs), they decided to leave it as is and do a calorie count over the weekend to see if Jody is eating enough on his own to sustain him.  I should also mention that in addition to the feeding tube issue, the CT scan showed that Jody had a bowel obstruction which was probably the cause of his GI symptoms.  Over the next few days they gave Jody treatments to help with this issue, but it never seemed to work well.  While the doctors didn’t feel the misplaced and coiled ‘J’ tube had anything to do with Jody’s GI issues, we didn’t agree.  It seemed he only started having problems after his tube was revised.  Finally on Sunday, they pulled his ‘J’ tube out at this bedside.  He said he could feel it uncoiling as it was being pulled.  It was a relief to him to have it out and since then he has tolerated food without the painful cramps, bloating and nausea.  I’m sure the team would deny any correlation, but it seems more than just a coincidence.  Now we need to pray that his appetite will return so that he can start putting on weight.

There is so much more I could tell you about what’s been happening over the last week.  Since I’m a little behind in updating you I can’t expect to get through everything in this one post.  The best, most notable and surprising news I have to share with you right now is that Jody came home tonight!!!  His long recovery will continue here at home.  He’s still very weak and frail, and easily fatigued.  There is so much for us to learn and adjust to as well as an unbelievable amount of medications to figure out.  Hours upon hours of education have come down to this.  We ask you to pray that the transition from hospital to home will be smooth.  I look forward to telling you more about this when I get the chance.  We are stunned that transplant has come and gone, and after five weeks Jody is finally home!  We appreciate your continued support and encouragement as this journey is far from over.  More to come… I promise.  Now check out the surprise ‘going home’ shirt I gave to Jody, I think it’s my new favorite; no truer words have ever been spoken.

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Welcome Home Jody!

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Special ‘going-home’ shirt

The Auction: Fun, Photos & Facts

15 Oct

Our Jody Needs Lungs benefit auction is over and what a day it was!  We couldn’t be at the event since Jody was just transferring out of the ICU, but we heard from people that it was a great time!  Below is Jamie, our friend and auction planner (standing 10th in from the right), along with her the team of volunteers who made this day possible.  If you were one of those volunteers and are reading this post… thank YOU!  You helped to make this day run smoothly and successfully and we appreciate that you were willing to give up your precious time on our behalf.

JNL Auction Volunteers

Since we couldn’t be at the auction, John Martin of John Martin Photography, kindly volunteered to photograph the event for us.  It was great to know we could count on him to be our ‘eyes’ at the event.  We loved seeing the pictures he took and thought we’d share them with you.  Rather than going into details about the event, we’ll let the pictures do all the talking.  To view the online gallery, click below.  Thanks again John, for giving us this gift.

Link to auction photos by John Martin Photography

When planning this event we decided on having a photo booth since they are all the rage right now.  Jamie came up with a fun way to combine photo booth silliness with encouragement for Jody by asking attenders to write supportive messages on a chalk board frame when they had their pictures taken.  Robert Buzzard of Robert Buzzard Photography willingly agreed to help us out with this activity and he has provided the link below for you to see the fun for yourselves.  Thank you Robert for supporting us by donating this activity at the auction, Jody was encouraged by all the messages.

Link to photo booth photos by Robert Buzzard Photography

Password: Jody_DSC0134

About a month before Jody’s transplant he and I created a short video that could be shared at the auction.  While it’s far from perfect we were proud of how it came out and thought we’d share it with you.  This video was shown just before the live auction began.  We hope it creates awareness of Cystic Fibrosis, a disease which frustratingly, few people know much about, and one that is near and dear to our hearts (you might not be able to view this video from email, but will probably need to go to the blog site itself).

Here is part of a letter that was read for us at the auction and seemed fitting to share:

“The day after Jody was told of his need for a transplant, a transplant social worker met with us to discuss fundraising. We sat there dumbfounded that #1, it was time for him to get a transplant, and #2, that this woman was suggesting a fundraising goal of $100,000!!! We were told the first year post transplant is estimated to cost $70,000 alone. Although we are so very grateful for our insurance to help with these costs, the out-of-pocket expenses seemed overwhelming and impossible to face.”

“When our friends got word of this news they quickly took the burden of fundraising off our shoulders. Brainstorming began, a logo was designed, a website was created, word spread and fundraisers started. We have been overwhelmed by the outpouring of support and the money that was raised even before transplant occurred. We felt relieved to know that we were well on our way to being financially prepared for Jody to receive the call for his new lungs.”

Having said that, thank you, thank you, thank you to each and every one of you who had a part in making our benefit auction a success.  Whether it was in planning, prepping, getting or giving donations, picking up items, sharing the event, volunteering on the day of the event, purchasing items at the auction, YOU MADE IT POSSIBLE!!!  Together you added $13, 078 to our transplant fund!  This figure does not even include the money raised from selling t-shirts at the auction, which we hear were a big hit (on a side note, we have a few shirts left if you are interested in purchasing one leave a comment).  We couldn’t be more pleased with the outcome of this event.

Now that the auction is over, we want to tell you again how much it means to us to have your emotional, practical, prayer, and financial support.  Already, this transplant has been expensive (food, outrageous parking fees, fees for use of the room TV, purchasing medical equipment for home, missed work, etc). and we haven’t even left the hospital yet.  Your financial support has given us so much peace of mind as we face these costs as well as the hospital bill and medication and doctors expenses throughout this first year post-transplant.  From the bottom of our ‘healthy’ lungs, THANK YOU for your support!

*When life settles down a bit I intend to create a photo book as a keepsake of the auction.  If you have any photos to share with us, please email them to tiffany@supportjody.com.  You can also leave any comments or funny stories you have about the day here on the blog so they can included in our photo book.  Help us remember the auction through those of you who experienced it firsthand.*

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