Five Dreaded Words

16 Aug

“I think I’m getting sick.”  Those are some of the most dreaded words for a CF wife to hear.  There is a lot of physical, emotional, and financial stress behind those five words (physical, as in coordinating childcare, getting things done at home, rotating between home, hospital, and work, etc.).  When Jody speaks those words I’m usually not surprised and often it’s something I’ve wondered about myself.  It takes a conscious choice however, to move from denial of another infection to accepting the inevitable, and seeking treatment. This begins by making a dreaded phone call to Jody’s CF team, alerting them to his symptoms and our suspicion of another infection.  Such was the case this week.  We enjoyed the entire month of July free of infections and hospitalization, for which we are oh so thankful!  Suspecting our infection-free period was coming to an end, Jody made that dreaded phone call this Tuesday and was seen in the CF clinic on Thursday.

As a result of Jody’s complicated (antibiotic) allergies with anaphylactic reactions, we have been told in the past that he is no longer allowed to start IV antibiotics from home.  Instead, his team feels he needs to be monitored closely, in a hospital setting, to ensure his safety when initiating these powerful drugs.  Because of this, we left for our Hopkins appointment on Thursday with our bags packed, prepared to stay, but hoping to return home.  And that’s just what we did!  Surprisingly enough, Jody’s doctors decided to put him on the same antibiotic regimen they used in June (Zyvox, Zosyn, & Colistimethate), and felt he could begin them from home since they were well tolerated before.

Jody's "Luggage" (O2 tank and a continuous IV pump).

Jody’s “Luggage” (O2 tank and a continuous IV pump).

Yesterday morning all of his supplies were delivered.  I inserted and dressed the needle in his chest (he has an implanted port for medication administration), and with the Epi pen nearby, he began all of his antibiotics, thankfully without any difficulties or reactions.  For the next two weeks (at least), Jody will have some extra “luggage” to carry around, as he puts it, referring to a continuous IV pump used for one of the three above drugs.

Jody's continuous IV pump

Jody’s continuous IV pump

The advantage to this pump is that he doesn’t need to wake up early and during the middle of the night to give himself his medications since it will do it automatically while he sleeps.

We’re really glad Jody was able to avoid another hospitalization.  I work 24 hours this weekend and it gives me much peace of mind to know that he will be at home, relaxing, instead of in the hospital where I would be missing out on his care and physician visits.  Still I wish I could be home with him this weekend but such is the life of a CF wife.

Completely off the subject, the wait for transplant continues.  August 25th will mark five months of being active on the list.  After getting the first call for his new lungs only a month after being listed (which turned into dry run 1 of 2) we naturally assumed transplant would happen sooner rather than later.  Honestly, for a variety of reasons, we truly believed it would happen in June or July.  Our oldest daughter turns six August 24th, and will begin kindergarten the next day (8/25), so we are now hoping that transplant will at least hold off for this, especially since she has a lot of anxiety about starting school.  It’s hard to think that because transplant hasn’t happened yet we will miss out on a lot of her kindergarten experience when the time does come, and it also poses a lot more work for our parents, who do not live in our school district, and will need to transport her to and from school everyday.  Our youngest also starts preschool in the beginning of September so she will need to be transported back and forth as well.  This is one of the reasons we hoped transplant had happened already.  On the flip side, we understand that in order for Jody to get his new lungs it means the loss of another life, and that’s not something we want to rush, especially just to make our schedule more convenient.  Schedule aside, Jody is ready for his transplant.  He’s tired of the hassles of Cystic Fibrosis, the struggle to breathe, the inability to do the things he enjoys, and of the need for continuous oxygen.  While we may not understand it, we trust that God’s timing is better than ours, and hold firm to the belief that Jody will get his new lungs in God’s most perfect time.  Until then, please continue to keep him, and our family in your prayers.

 

Save the Date:

Auction Promo

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Rare Moments

18 Jul

It’s been a few weeks since I’ve given you an update on Jody and often no news is good news.  June was a rough month for him, spending a lot of time in and out of the hospital or home sick and on IV antibiotics.  Typically when Jody finishes up a three week course of these antibiotics (assuming he’s been on the right combination of them), his energy returns and he starts feeling a little better.  Usually his PFT’s (lung function studies), improve slightly as well.  This go-round was no different.  In July, the girls and I appreciated seeing him spend less time in bed sleeping, and more time awake and active (as active as one can be in end stage lung disease where every activity takes your breath away).

One day this month the four of us even spent a relaxing day at a friends in-ground pool.  Although Jody was tied to his O2 tank, he could leave it on the side and at least stand in the pool, by the edge, and get wet.  The girls enjoyed having him there, even if he couldn’t swim with them, or throw them in the water like old times.  That day Jody took his afternoon nap on a lounge chair under an umbrella, while the girls and I enjoyed a rare (as of late), fun summer afternoon.  While it seems everyone around us is enjoying summer to the fullest, free and unhindered by disease, we are learning to be thankful for these rare days, hours, and moments when we can forget about the past and future, so full of uncertainties, and focus on the present.  Moments like these are good for the soul.

As the saying goes, all good things must come to an end, and this is especially true when speaking of Cystic Fibrosis.  We’ve noticed a pattern for Jody where after about three weeks of IV antibiotics he starts feeling pretty good, but sadly it only lasts about three or four weeks.   Soon “good” turns into “okay,” and okay turns into “lousy,” and lousy turns into a hospitalization.  Yesterday Jody had a routine check-up in the CF clinic and we could classify him as being in the “okay” category.  He’s been feeling a little more short of breath, his lungs are a tad more junky than normal, and his PFT’s are a little down (not quite as bad as they were in June).  If left untreated, the chances are Jody will quickly move from “okay” to “lousy” and I already told you where that will land him.  Hoping to prevent this, the doctor ordered oral antibiotics (in addition to the ones he takes daily to hold the chronic bacteria in his lungs at bay).  She also wants him to increase his oxygen to 6L with activity (showering, taking care of our girls, climbing steps, etc.).  The fact that he is now requiring 6L of O2 should bump up his score on the transplant waiting list.  More oxygen requirements also means bigger, less convenient tanks for going out.

We had been hoping to go out for dinner to The Cheesecake Factory at Baltimore’s Inner Harbor following Jody’s appointment, if he felt up to it.  The last time we did this was a little over a year ago to celebrate a good appointment.  We knew this wouldn’t be a celebration, but rather, one of those rare times when we live in the present, forgetting everything else going on in our lives, and enjoying the simple moments in life.  And so we did, big oxygen tank and all!  We even took a very short walk after dinner.  I have been working on contentment, in suffering and in waiting, and as we stood there, overlooking the harbor, hand in hand, oxygen along side, I felt content.  I felt thankful, for the health Jody does have, and for the oxygen tank which allowed us that moment.  A positive attitude and contentment in this situation doesn’t come easy; those “lousy” days get the best of me sometimes, but I think it’s those few “good”, I mean really good, days/moments that get us through the bad.  It’s also the hope that eventually, after transplant, the lousy days will be few and far between as they are replaced with days filled with pure goodness.  Until that time comes, we’ll continue to relish the rare moments in our present life that make it enjoyable and endurable.  I hope you will too.

 

 

 

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Mark Your Calendar

9 Jul
Save the Date

Save the Date

October 11th, 2014.  Mark. Your. Calendar.  This is the date that has been selected for our biggest fundraising effort to date, including a live and silent auction.  We are super excited for this day, and hope you will join us.  This event has the potential to make a big impact in pushing us closer to our fundraising end goal, but we can’t do it without your attendance.  Please mark Oct. 11th on your calendar and plan to attend.  This event includes family fun, so bring your whole family with you.

This auction is three months away and preparations are in full-swing.  We are now accepting donations of items and/or services as well as auction sponsors.  Perhaps this is something you can help us with, and here are some examples:

  • A themed gift basket
  • A service: photography, lawn mowing, snow removal, hair cut/color, or maybe you enjoy cooking and would be willing to auction off 12 homemade meals (one/month for a year for a family of five or less).  The sky is the limit.
  • An item:  Are you a talented artist, a business owner, a vacation holder, an antique collector?  If you have an item that you believe would do well at an auction, we welcome your gift.
  • An experience: Do you love to entertain?  Could you host a dinner party in your home or backyard?  Perhaps you have your pilot’s license and could offer a short flight experience.  Think boating, ballooning, ziplining, a limousine ride, the possibilities are endless.  You may not be able to provide this service yourself, but would you be willing to purchase this item and donate it as an auction item?
  • Event sponsor: For a minimum donation of $250 your business name and logo will appear in the event catalog and other promotional materials, which we can also source for you directly from our friends at a leading printing company in London for extra fees, as well as recognition from the stage during the live auction.
  • Family Fun help: Part of this event will include family fun time.  Are you a face painter and willing to offer your time?  Could you set-up a fun photo booth?  Is there a practical service you can offer to kids on the day of the auction?

We are anticipating a lot of out-of-pocket expenses associated with Jody’s transplant and recovery so you can imagine we are hoping this auction will be hugely successful.  In order for that to happen we really need your help.  Please SHARE this event, and encourage others to attend.  Additionally, if you know of someone (your boss, family member, or friend) who you think could donate something for the auction, please contact jamie@supportjody.com for an auction donation form.  If you follow our Jody Needs Lungs Facebook page you will soon begin to see information posted on businesses and items that have already donated.  This info will also be able to be viewed under the “Auction” tab on our website, JodyNeedsLungs.com.  We are so thankful to each of these people and business who were touched by our story and moved to help.  We hope you will too.

Auction Promo front

Auction Promo back

* Donations are not tax-deductible*

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Dry Run #2

26 Jun

This isn’t exactly the blog post I was planning to write this morning.  I wholeheartedly expected to announce today that Jody got his new lungs.  Instead I’m telling you the story of another dry run.  In case you missed the last one, here’s the story of our first dry run, reading that one will help you understand this one a little better.

Yesterday, June 25th, marked exactly three months that Jody has been active on the national lung transplant waiting list.  When that happened, I remember his doctor speculating he would be called within three to six months of being made active.  He was called after only one month of being listed, and now again at three months.  Here’s the story of our second “dry run”.

Last evening at 6:45 pm, our phone rang.  Every time this happens I find myself holding my breath wondering if it’s “the call,” and time to jump into action.  Usually it’s not, but this time it was!  When Jody answered, it was a transplant coordinator from Johns Hopkins.  She called to say that Dr. Shah (the surgeon who will be performing Jody’s transplant operation), wanted us to know that there was a potential donor.  We were told not to come in yet, but to begin preparing just in case.  She promised to call back either way.  I began to start packing things for our girls, tidying up around the house, and Jody hopped in the shower (because who knows how long after transplant it would be until he could shower again).  At 8:00 pm, the transplant coordinator called back to say, “It’s a go!”  In other words, this is it, this donor is for you (Jody)!  She told us that we didn’t need to be there until midnight, and that surgery would be tentatively scheduled for 4 am 6/26.

You might be wondering about this big gap in time so I’ll explain my understanding of the events (and this may not be 100% accurate because often information is purposefully left out, and we have to read between the lines).  Between 6:45 & 8:00 pm, I believe the surgeon and his team got word of the possible donor and began reviewing this persons medical records to know if “on paper” the donor was a perfect match.  We did learn that the donor was 40 years old and that his/her lungs were not considered high-risk lungs.  Once this donor was approved on paper, we received the second call, telling us to be at the hospital in four hours.

I would like to pause here to clear-up a common misconception.  People often choose NOT to become organ donors because they fear they will be taken off life support prematurely so that their organs can be donated.  This is just plain false, and quite honestly an uneducated argument!  When tragedy strikes, and people experience brain death, it’s only a matter of time until their organs begin to shut down and death is imminent.  In the case of Jody’s potential donor last night, the family would have been told that their loved one was not going to survive whatever it was that caused this tragedy, and that death would be soon.  They were most likely given the option to wait it out until the end, in which case the organs would have been unusable (and would probably have been a matter of hours to a few days), or to make the call to stop life support, thereby avoiding the death of their loved ones valuable and viable organs.  They would have been given the option to donate their loved ones organs so that hope could come from their tragedy.  Let me be blunt, sadly, organ donation or not, this person would not have survived their injuries.  People are NOT taken off life support for their organs if there is ANY chance of survival.  Please make sure you are properly educated before you make the decision not to become an organ donor.  In this case (and any case of organ donation), I’m thankful the family made the selfless decision to give life (because even though it didn’t work out for Jody, I’m sure others were blessed with this persons life-giving, life-changing organs).  This family has been heavy on my heart, and I am keeping them in prayer because even though they are giving life to others, they are grieving a terrible loss of their own.

Okay, now that I have stepped down from my organ donation soap box, I’ll return to our story.  Up until this point I believe the donor was being kept alive and on life support.  Once it was determined on paper that the lungs would work, and we were notified, a transplant surgeon (not Dr. Shah himself), and a cardiothoracic fellow (doctor) flew out to wait for and personally evaluate the lungs once they were harvested.  This sounds fast and simple, but it takes time and patience.

Final goodbyes before transplant

While all of this was occurring, I was so thankful for the time we had to prepare.  This was exactly what I (and probably some of you), had prayed for.  We had time to pause and think without rushing around like chicken with our heads cut off.  By 9:10 pm, my Mom had come and gone with our girls, but not before we took a family picture.  At 10:05 pm we hopped in our van to head to JHH.  Ironically, when Jody started the ignition, the first words I heard playing on the radio were, “Tonight’s the night.” Words from the Toby Mac song, City On Our Knees.  I couldn’t help but wonder if that was a sign.  Apart from the pouring rain, our drive to Hopkins was seamless, the complete opposite of our last stress-filled dry run.  Because it was later at night, we hit no traffic, it was great!  We arrived at JHH at 11:35 pm.

Since the admitting office was closed, upon arrival we were instructed to go to 10W (the cardio-thoracic post-surgical progressive care unit).  This is also the unit to which Jody will be transferred once he is moved out of the ICU following transplant.  Once there he was told he would have blood work done, an IV started, an EKG, and be placed on a cardiac monitor.  At 1 am a cardiothoracic resident came in to review the procedure, answer questions, and have Jody sign consents for surgery.  The team of physicians who had flown out to get the lungs were not back yet, and surgery was still tentatively scheduled for 4 am.  At that point we knew this could still turn into a dry run.  In fact, we were told that Jody may even be taken to surgery, put to sleep, only to wake up and be told the lungs were not good, and that the surgery never happened (imagine the disappointment in that).  Despite that risk, we believed that this was the real deal.  We felt relaxed and actually dimmed the lights in the room in an attempt to get bits and pieces of sleep.  At 2 am the same resident who had signed consents with us opened the door to Jody’s room and instantly we knew.  His face said it all, no words were needed, but he spoke something like, “I’m really sorry guys, we can’t use the lungs.  There were nodules on them and Dr. Shah doesn’t feel comfortable using them.  It’s not worth the risk.  You are free to sleep here or to go home, I’m really sorry.”  Unlike last time I was stunned.

Everything about this dry run was perfect, exactly what we had hoped and prayed for.  In fact on the way home (at 2:15 am) we were debriefing and Jody asked me what I would do differently the next time, and I couldn’t think of anything.  It was fabulous to have the advanced warning and so much time to prepare.  The drive was uneventful.  Since it was late at night the hospital appeared empty and quiet.  One word to describe this entire experience is calm.  We were prepared and relaxed, unrushed, and unlike our last dry run, everything flowed smoothly and calmly.  Even the timing seemed right, my FMLA at work has now been renewed for another year, and this would allow Jody to be home for our oldest daughters 6th birthday in August, and first day of Kindergarten the day after that.  I guess because it felt right, I believed it was right.  But I was wrong.  After our last dry run I was relived, I just wasn’t ready, this time I felt genuinely disappointed, Jody too.  We left bummed and emotionally drained.  This time when we got in our van, the first words of the song we heard playing on the radio were, “And I’ll praise You in this storm…” (Praise You in This Storm, by Casting Crowns).  I had to stop and say, God I don’t understand it, I’m disappointed, but I trust You and your timing, so I’ll praise You regardless.

We’ve now experienced both a bad and good “dry run.”  Who knows what the next call will be like.  Hopefully it won’t end in me writing a Dry Run #3 blog post, but rather in my making that long-awaited announcement that Jody did indeed get his new lungs.  Until then, continue to pray that the next call will not hold the stress and craziness of dry run #1, but instead would be covered in the peace and calmness of dry run #2.

 

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Home After Short Stay

19 Jun

The last few days of medication changes for Jody went off without a hitch so he was able to be discharged yesterday (woo hoo!).  One thing we found out since my last post is that when he was in the hospital last week he apparently tested positive for the Rhinovirus (the virus which causes the common cold).  This could also explain the excessive fatigue he was experiencing.  Most likely it was a combination of both this virus and the antibiotics which were not effectively fighting the bacterial infection in his lungs.  In Jody’s case the Rhinovirus could take up to six weeks to go away, but the bacterial infection should start to improve.  In fact, Jody’s PFT’s  (lung function studies) yesterday showed an increase of five percent from a week ago (22% then, 27% now).  Hopefully things will continue to move in the right direction.  He does already seem to have a little more energy than last week so I’m thankful for that.

Thank you for the anniversary well wishes.  We were able to make the most of it despite our surroundings.  It was nice to simply spend the day together (without the kiddos).  Jody could have been transplanted and kept sedated on a ventilator in which case the day would have come and gone without any form of celebration whatsoever.   We’ve decided that since this anniversary was especially low-key, we’ll just have to celebrate our 10th in a BIG way!

Celebrating 9 years of marriage, hospital style.

 

 

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Hotel Hopkins Celebration

17 Jun

Well, my gut feeling was right.  Last night Jody was re-admitted to the hospital which means we’ll be celebrating our 9th wedding anniversary (today) here at Hotel Hopkins.  Jody joked that it’s too bad he can’t get a pass to take his IV pole and go to The Cheesecake Factory for a date.  In due time I guess.  We’re just thankful to be together.

The reason for this admission is because Jody simply isn’t improving on his current antibiotics.  His sputum culture from last week is showing that one of the bacteria in his lungs is resistant to Meropenem, one of the three antibiotics he is taking.  This would explain why his condition isn’t improving.  Let me explain this process a little more for those of you non-medical readers.

Every time Jody is admitted to the hospital (and usually even for routine clinic visits), the doctors request that he give them a sputum sample from his lungs.  This sample is then sent to a lab where (in Jody’s case) it grows bacteria.  Once the bacteria is identified, further testing is done to determine which antibiotics will be effective in treating the bacterial infection.  This process (growing bacteria) is slow and the final results can take a week or more to come back. Until those culture results are finalized, choosing the right antibiotics can be a bit of a guessing game.  When Jody was discharged last week the final results of his culture were not back yet so he was started on a combination of antibiotics that have worked for him in the past (since the bacteria in his lungs is usually the same each time).  In my last post I mentioned that Jody didn’t seem to be getting better and that I questioned if he was on the right antibiotics.  It turns out he wasn’t.  Because of Jody’s allergies his team of physicians have decided against allowing him to start IV antibiotics at home.  Instead, he was asked to come into the hospital so his medications could be changed and doses adjusted under supervision.  The plan is to continue the oral Zyvox, switch the IV Meropenem to Zosyn, and increase the dose of IV Colistimethate (I’m including these names more for our records than because I think you care about the specifics of his antibiotics).  As long as these medication changes are well tolerated, he should only be in for a few days.

Now, a message for Jody:

Jody, since this is our anniversary and all, I’d like to say that you are awesome!  I have watched, countless times, as you’ve gotten stuck with needles, big and small, had nearly every square inch of your body poked and prodded, been tested, xrayed, endured great pain, felt lousy, struggled to breathe (and continue to do so), given up things & hobbies that you enjoy, sat on the sidelines, pushed yourself and fought… and continue to fight, all because of Cystic Fibrosis.  And what I find most inspiring is that you do it all without complaint.  I know it can’t be easy to walk in your shoes, but you keep going, putting one foot in front of the other, and you keep your head held high.  You impact people wherever you go.  You’re climbing this mountain with great determination and perseverance, and I know your efforts will be rewarded.  I’m so blessed to walk this journey with you, thank you for choosing me.  I’m leaving you with a song* that speaks to where we are in life right now, and I hope it will encourage you in the fight to know that I will always be by your side.  Happy 9th anniversary, I love you!

P.S.  If you’re a reader who enjoys pictures, you can sneak a peek of a few more wedding photos by clicking here.

 

*Angel By Your Side – Francesca Battistelli

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Gut Feelings

14 Jun

This post will be brief, but I want to update you on Jody.  He was discharged from the hospital on Wednesday (6/11), after a six-day stay.  Although he needs it, we still do not have a CPAP machine at home because we are waiting for approval from our insurance company (it frustrates me greatly that insurance companies dictate health care so much).  Hopefully this will be straightened out soon so Jody can get the treatment he needs.  One good thing to report is that we were able to switch out the O2 compressor we had at home (which only went up to 5L of oxygen) for one that is high flow (goes up to 10L).  It’s nice to know that we now have “extra” O2 should Jody need it.

In the last three days that Jody has been home, he’s been spending a lot of time sleeping and has been getting a lot of chest pains (this has been a chronic problem, which the doctors describe as irritation in the lining of his lungs).  Although this is an ongoing issue for him, the pain seems to increased right now.  I also think he looks sick, and my gut feeling is that he’ll be back in the hospital next week.  It could be that he’s not on the right combination of antibiotics to treat the infection in his lungs, so they might need to change them up a bit.  This was the problem we had last fall when he was hospitalized about four times until they finally found the right concoction of drugs to knock the “bugs” out of him.

Jody does not have much bounce-back left.  I feel like he’s walking a very fine line right now.  He really needs this transplant before he becomes too sick to get it.  So in addition to the 30 Days of Prayer for Jody prayer challenge, please pray that his current condition would improve so he can avoid a repeat hospitalization next week, or further deterioration prior to transplant.

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Carbon Dioxide & CPAP

8 Jun

Hello.  I thought I’d give you another update on where things stand with Jody.  He’s still in the hospital and has been getting his antibiotics (Meropenem, Colistimethate, and Linezolid) without difficulty.  Hopefully this combination will be sufficient to knock the “bugs” out of him.  He had the blood gases done that I talked about in my last post, and they confirmed that he’s not getting rid of enough carbon dioxide (CO2), particularly when sleeping.  To explain this very simply, when we breathe, we inhale oxygen, and exhale CO2.  Because of Jody’s advanced lung disease his body has a hard time keeping his airways open well enough at night for the CO2 gas to be expelled properly.  Instead, it builds-up in him, and is primarily manifested in the form of headaches when he wakes up.

Jody’s new “CPAP” mask

Treatment for this problem is the use of CPAP (Continuous Positive Airway Pressure).  This is a mask Jody will wear to sleep which will deliver both oxygen, and a continuous pressure into his airways, forcing them to stay open so the CO2 can be expelled efficiently.  This will also help the oxygen to more effectively get to where it needs to go.  You may have heard of CPAP before because it is the same treatment used for those with sleep apnea.  Jody will wear the CPAP mask here for a few nights and then will have repeat blood gases to see if it was effective in getting rid of his CO2.  If not, they will make changes to the settings (the pressure) and try again.  This looks really uncomfortable to sleep in, and we’re told might take some time getting used to.  I told him he looks like an O2 superhero.  All kidding aside, pray that this adjustment goes smoothly and Jody will be able to sleep well and wake up headache free.

Upon discharge we are also going to need to change the portable oxygen set-up we have at home for Jody to use when he goes away.  Currently he uses a system that only gives him oxygen when he takes a breath in (not a continuous flow).  With this method he can get about five hours use from each tank with it set at 2L.  The problem is he’s just not getting enough oxygen.  He needs the continuous flow, and more like 4L (which is what he uses at home).  This means we are going to need to exchange our small portable O2 tanks in for the big ones, and at 4-5L of continuous flow it won’t give him a lot of time to be away from home.  It feels like he’s become home-bound.  Our lives have changed a lot this past year and it sounds like this is just one more thing to get used to.  I think this (combined with the new need for CPAP), makes him all the more ready for transplant.  It’s so hard to watch him go through all of this, but truly, he takes it all in stride.

There has been no talk of discharge yet, and honestly, we haven’t even asked about it.  We’ve learned to be patient, and that even if they did give us an estimated discharge date it would probably change when the time came.  I have been able to spend the last four days at Jody’s bedside and it has been great.  Today I will return home to uphold my commitments to work.  One great thing about Hopkins is that when I leave him here, I always know he’s in good hands.

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CF Exacerbations

6 Jun

Bridge from parking garage to JHH

Good morning!  Many of you probably saw the Facebook post on our Jody Needs Lungs page last night that Jody was admitted to Hopkins yesterday evening.  This was, of course, related to his Cystic Fibrosis, but completely unrelated to transplant.  This is a typical CF exacerbation, like those you have read about many times here on my blog.  It’s hard to know what to say (to keep you interested) that hasn’t already been said, and yet, this is our life.  This is Cystic Fibrosis.  While you might read this and think, “Oh, it’s just another infection,” to us its a lot more than that.  It impacts our living, working, and for Jody, breathing.  Even though a hospitalization always puts a kink in life, I’m so thankful for this “little” exacerbation because I know it could be a lot worse.  It could be pneumonia, or something worse, and he could be very sick; too sick for transplant.  So I’m counting my blessings and enjoying the time I have to spend at his bedside, making memories.

Airway clearance by chest PT

This time Jody’s symptoms primarily included increased shortness of breath, requiring more oxygen use, complaints of frequent headaches, especially through the night or when napping, and feeling more tired.  Again they want to check blood gases (both venous & arterial) to see if his carbon dioxide (CO2) level is too high.  Today he was started on his usual triple IV antibiotics, and he continues with his standard hospital services, such as nebulizer treatments, rehab, and chest physical therapy (PT).  Above is a picture of Jody from his chest PT session this morning with therapist, Lauren, who is pounding on his back and sides.  This is a form of airway clearance which helps to loosen and break-up the mucus from his lungs.  At home Jody wears a mechanical “vest” to shake the mucus loose, helping to clear his airways.  Jody also had lung function tests done this morning and his lung function is now down to 22%, the lowest it’s ever been (which explains the increased shortness of breath).  We hope that after this course of antibiotics that number will improve ever so slightly.

If things progress as planned, we don’t anticipate this being a long hospitalization.  Jody will finish his three weeks of IV antibiotics at home after discharge, as he has done many times in the past.  He also continues to wait for the call for his new lungs, which we pray will come before these “little” exacerbations become more serious, hindering Jody’s ability to get a transplant.

Once again I want to thank all of you who are praying for us and continuing on in the “30 Days of Prayer for Jody” prayer challenge.  Someone recently asked me if we feel prayed for, and we do.  Thank you!  Please keep the prayers coming our way.

 

 

 

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The Gift of Prayer

30 May

Prayer is a gift-AI believe that prayer works.  That it’s powerful and effective. Prayers may not always be answered the way we would like, if at all, but they will always bring us closer to The One who has the power to change a situation.  With this understanding, I find myself praying often for Jody’s upcoming transplant.

There are many aspects of the journey we are about to take that I desire to cover in prayer, and sometimes it feels overwhelming.  Recently I had the idea to write down all the prayer requests I could think of and pray for one specific area each day.  I know that some of you are faithful in keeping us in your prayers, so the more I thought of it, I decided to share my prayer list with you.  Why not turn it into a prayer challenge?  The month of June is just around the corner, which seems like the perfect time to start.  Will you join me in a 30 day “Prayer for Jody” challenge?  Below I have listed a prayer focus (request) for each day of the upcoming month.  Please consider supporting Jody and my family by giving us the gift of prayer each day for the month of June.  It’s free, easy, and perhaps God will use this time to speak to you about an area of your life as well.

Prayer for Jody Challenge

If you accept this challenge, hit the “print” button at the bottom of the post for a print-out which can be hung in a place where you will see it often (the refrigerator, your desk, your car, etc.).  One can never have too many people praying for them so please share this post with the prayer warriors in your life, and ask them to join us in covering all aspects of Jody’s transplant in prayer.  Make a difference, and give the gift of prayer!   

June 1:

Health Today – Pray for Jody’s current health as he awaits transplant. Pray against any infections that would cause a rapid deterioration before transplant. Jody’s doctors believe that in his current state it wouldn’t take much for him to go downhill fast. Additionally, if he needed to be on a ventilator for an extended period of time prior to transplant, it would disqualify him from being able to have the operation at all. The healthier he is going into his transplant, the better his recovery will be, so pray for protection over his lungs and overall health until the time comes.

June 2:

The Donor – Pray for Jody’s donor who is, at present, living and breathing. Pray that he/she would know Jesus as their personal Savior & Friend. Pray that they would make the most of their time left, not taking a moment for granted. Also remember to include prayers for the donor’s family as they will be forced to make the decision of whether or not to give the gift of life.  This family will also need your prayers as they grieve the very sad, and unexpected loss of a loved one.

June 3:

The Call – Pray that we will be ready when Jody gets the call for his transplant. Pray that we won’t be too far from home and that we’ll have time to grab a few last-minute items (things that couldn’t be packed ahead of time). Pray that the drive will be uneventful and that we won’t be held up in traffic like before. Pray also for a supernatural peace/calmness when the call comes.

June 4:

Emotions – This journey has, and will continue to be an emotional roller coaster. Pray against negative thoughts and feelings, such as fear, hopelessness, doubt, worry, anxiety, offense, etc. Instead, pray that we would be filled with peace, strength, faith, hope, trust, courage, etc.

June 5:

Fundraising Efforts – While Jody and I are primarily focused on his health (and will continue to be post-transplant), there is a team of people working behind the scenes to help us with fundraising.  Jody’s transplant, recovery, and post-op medications (just to name a few) will be a financial burden on us.  This team of volunteers is working to eliminate that burden by fundraising on our behalf. While this is a huge blessing to us, it puts a lot of work & responsibility on them. Pray that people would respond to their call for help and support, particularly with planning an upcoming auction in the fall. Pray that the team would feel encouraged and that their efforts would be rewarded. Pray also that people would continue to give financially so we can reach our fundraising goal set by Jody’s transplant social worker.  Finally, pray blessings over those who have already offered time, services, and/or financial help.

June 6:

Pre-Op – Pray for the period of time between our arrival at Hopkins and when Jody is taken to the operating room.  He will undergo a few tests during this time.  Pray that anxiety would be minimal and courage and peace would be plenty.

June 7:

Our Families – Pray for our families, particularly our Moms, whose primary role in all of this will be to take care of our two daughters. It’s one thing for a Grandparent to babysit here and there, but it’s another thing for them to care for young, energetic kids for weeks on end with no break. Pray for strength, endurance, and patience too. Also pray blessings on them as they give of themselves in such a big way to help us through this time in our lives.

June 8:

The Surgery – Pray for the surgeon, anesthesiologist and other team members who will be caring for Jody during the actual transplant. Pray that Jody’s old lungs will tolerate the surgery so that he won’t need to be placed on a heart/lung machine during the procedure. Pray that God would guide the surgeon’s hands, preventing any errors from occurring. Pray that the surgery would be uneventful (progressing as smoothly as planned), uncomplicated, and a complete success. Pray that God would send His angels to protect and comfort Jody during this big operation. Also pray for me as I anxiously await updates and for the time when I see him for the first time post-op (he will be sedated and on a ventilator).

June 9:

Our Girls – Disease impacts an entire family, not just one person, and our girls are no different. Tabitha, age 5, misses how her Daddy used to be able to run around with her, and take her and her sister to fun places, like Dutch Wonderland. Words like oxygen, germs, infection, lungs, sick, sanitizer, hospital, etc., are an every-day part of her speech and play. She has a very basic understanding of what is happening with Jody. Piper, our 3 year-old, really has very little understanding if at all. Our girls are accustomed to Jody being around nearly 24/7 so they notice and miss him when he’s ill or hospitalized. Transplant separation could range from weeks to months so pray for our girls as they experience a temporary change to the life they’ve always known (since both Jody and I will be away much of the time and they will be staying with grandparents). Pray for safety over them while we are separated, and that they come out of this experience emotionally strong, whatever the outcome.

June 10:

Against Rejection – Pray that Jody’s body would accept the lungs from his donor as if they were his own. Pray for a perfect match! Pray against rejection. Pray against the many unpleasant side effects of high doses of anti-rejection drugs.

June 11:

Recovery – Pray for Jody as he begins the long road to recovery. Pray for minimal pain, and few (if any) complications.  Pray that I will be an effective cheerleader, encouraging him on in his recovery.

June 12:

Tiffany – Please pray for me as my role of caregiver takes on a whole new level. As Jody recovers I will be balancing both caregiving and life outside of the hospital (work, kids, home responsibilities, bills, dealing with insurance companies, etc…). I know this will be a busy and stressful time for me so pray for strength to make it through. Please also pray for my health both now and then. One fear I have is that I will be sick or have a cold when Jody gets his transplant. Even the slightest cold would prevent me from being able to be by his side, and this would be devastating for me. After Jody’s transplant, and for as long as he is in the hospital (I think) I will need to wear a plastic gown, gloves and mask (including to sleep, if I am even allowed to stay overnight with him). This can be quite hot and annoying if I’m honest. Pray that this “garb” would not faze me and that I would be comfortable at Jody’s bedside.

June 13:

Help – This upcoming lung transplant feels like a big, all-consuming mountain to climb. This mountain may not seem quite as large if we have people standing by us, cheering us on, and helping us along the way. Pray that God would provide those supporters when we need them the most. Pray also that when we are unable, our physical/practical needs will be met as well. Pray that we can be humble enough to accept the help when it is offered. Finally, pray blessings on those who sacrificially give of themselves by offering help and support.

June 14:

The Doctors – Jody will have a team of physicians managing his care. Pray wisdom on them to make the right decisions and for answers when they question the right thing to do. Pray for doctors who are kind, thorough, and willing to explain and teach Jody’s plan of care on a level we can understand.

June 15:

Positivity – Throughout this experience there will most likely be set-backs. Pray that we can remain positive in our thinking, keeping our eye on the end goal.

June 16:

Breathing – Pray that Jody’s time on a ventilator after surgery will be short and that there are no complications that would hinder his ability to breathe on his own. Pray that his lung function will steadily climb so that he can be off oxygen support and breathing easily and comfortably on his own.

June 17:

The Nurses – Nurses can make or break a hospital experience! Pray for the nurses who will be caring for Jody throughout his hospital stay. Pray that they are top-notch, great at what they do, but also warm and friendly. I remember thinking from past ICU hospitalizations that the critical care nurses tended to be much less warm and fuzzy (compared to regular med-surg nurses), even seeming annoyed when questioned. Pray against this, and that the nurses Jody is assigned will be great teachers, and will see him as the person (husband, father, son, brother, friend) that he is, and not just another patient. Lastly, pray that I would connect with Jody’s nursing team as well.

June 18:

Chest Tubes – Following his transplant, Jody will have four chest tubes which will remain in place to allow for drainage from his lungs. I have heard that they can be quite uncomfortable and even painful. I’ve also read stories of people needing to stay in the hospital for months after transplant, waiting for the tubes to stop draining so they can be pulled. Chest tubes can also get “clogged” resulting in a back-up of fluid, causing shortness of breath. Please pray against any complications related to these tubes.

June 19:

Rehab – After transplant an important aspect to Jody’s recovery will be pulmonary rehab (guided exercise). Pray for strength and determination to “get moving.” Pray for minimal pain during these exercise sessions. Pray for a connection with the therapists with whom he will be spending a lot of time.

June 20:

Tiffany’s Job – Pray that my managers will be understanding of my situation, and willing to work with me. We do not have a lot of flexibility with our schedules at work (and they are made up eight weeks in advance). Pray that it would work out more often than not that Jody’s appointments fall on my days off (I work three days a week and do not have a set schedule). Pray that if I need off on a day that I am scheduled to work, I would be able to find someone willing to make a switch with me. Pray that I do not run out of FMLA time throughout the next year. Finally, pray for my emotions when I must work. Leaving Jody’s (hospital) bedside to go to work is one of the hardest things I do, and I know it will be even harder after his transplant. Pray that I can stay positive and focused on the task at hand, despite everything happening in my life outside of work.

June 21:

Rest – It’s hard to get quality sleep in a hospital when interruptions are frequent. Pray that Jody would be comfortable and able to get the sleep he needs to wake up feeling well rested.

June 22:

Unnecessary stress – As we focus on Jody and his recovery after transplant, pray that our lives outside of the hospital will be guarded. Pray against things breaking down at home or with our vehicles. Pray against any of us getting sick. I can dream up all kinds of scenarios of things, completely unrelated to transplant, that could go wrong (the dog gets sick, a pipe breaks, a tooth cracks, the girls get sick, etc.). This would only add unnecessary stress. Pray that life apart from transplant will run as smoothly as possible during this intense time.

June 23:

Miracle – Receiving a new set of lungs will be, in and of itself, a miracle in Jody’s life. Right now, without this gift of life, his life expectancy is 1-2 years. As before, pray that Jody’s body would miraculously accept these new lungs as if they were his own. Pray that God would use this surgery to bring the earthly healing we’ve been asking for. Pray for a miracle!

June 24:

Germs – Being immunosuppressed post-transplant, germs, viruses and bacteria could be a real threat to Jody’s life. Frankly I am terrified of how we will keep Jody healthy when we have preschool/school age children who bring illness into our home. Even now it puts me in freak-out mode when I know they have a cold, and risk sharing it with Jody. Sadly, I imagine this will only get worse. Please pray for supernatural protection from the germs that will surround our family and Jody in particular, following transplant. Pray also for protection over him this upcoming cold/flu season.

June 25:

Safe Travels – Post transplant Hopkins will become a second home for us. In choosing not to relocate to Baltimore (as was first suggested), we will be making many trips back and forth between our house and the hospital. This 82 mile (one way) drive on a busy highway is sure to provide ample opportunity for something to go wrong. Once already during this trip our vehicle was damaged because of accident debris left on the road. This is one stress we hope to avoid.  Please pray for safety while spending so much time on the road traveling to and from hospital visits and doctors appointments.

June 26:

Learning – This transplant and recovery will be unlike anything we have ever experienced. There will be a huge learning curve as we prepare to bring Jody home. Pray that we absorb and understand the education we are given so that we can follow through with his care at home properly.

June 27:

Against Statistics – If you’ve been reading my blog long you know that lung transplants are not known to have the best long-term outcomes. They are done more to improve quality of life, and not necessarily longevity. Fifty percent of patients do not live five years out of a lung transplant, and only 38% of people live 10 years out. In 10 years our daughters will be 13 & 15, and still very much in need of their father (perhaps at that age even more so than ever before). These statistics are very hard to accept, and wear on me emotionally. I often find it easier to believe the statistics than that God could have a different plan. Pray against this. Pray also that God’s plan for Jody’s life would be to beat the odds stacked against him, and to watch his girls become grown women.

June 28:

Acceptance – There are no guarantees in life. While we hope this transplant will be long-lasting, we understand that God may have a different plan. Pray that we can accept The Lords will for our life (whatever it may be) and trust in Him always.

June 29:

Jesus – Pray that throughout this journey we see the power, love, and goodness of God, especially in times of doubt. Pray for opportunities to share the love of Jesus with the people we meet. Pray that our faith would be strong. Pray that above all, God would receive all the glory.

June 30:

You choose – Is there an aspect of this journey that you feel compelled to pray about? Perhaps something that I’ve not considered? Was there an area this month that God laid on your heart to continue praying for?  If so, take it to The Lord on our behalf.

Afterthoughts:

To those of you who completed this challenge, THANK YOU!  It’s reassuring to know that Heaven was flooded with prayers for the success of Jody’s transplant.  When the actual time comes, please continue to lift us up in prayer as we begin to climb the mountain set before us.  We’re looking forward to “the sweet life” when we get to the other side, and we know that it will be your prayers helping us, encouraging us, and moving us forward on the journey.

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