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.

 

 

 

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, 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*

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.

 

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.

 

 

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

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.

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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