Tag Archives: organ donation

Merry Christmas ’14

24 Dec

Merry Christmas to you, our friends, family, healthcare workers & readers!  Thank you for the support you have shown us throughout this past year.  We have much to be thankful for, beginning with a baby, born in a manger, some 2000 years ago who brought forgiveness and hope, life and freedom.  This Christmas may you feel His presence in all you do.  And when the wrapping paper starts flying, the family starts gathering, and the craziness begins, remember to take a step back, relish the moment and just breathe…

Christmas collage

This Christmas we remember those in our lives who have lost loved ones and find this to be an especially difficult time of year.  We also remember Jody’s donor family, knowing that this year there will be one less person sitting around their Christmas table, and the heartache that must cause them.  This year we bought a special ornament to hang on our tree in honor of his donor.  The words of this ornament couldn’t be more true as his donor left behind life… for Jody… and for other organ recipients.  We’re so thankful to God, his donor, and donor family for this great gift.  Our gift to them is that we will live life, protect Jody’s lungs, and most of all… never forget.

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Bump #2

1 Oct

I could probably call this post bump # 4, 5, or 6 after all the little setbacks we’ve had since Jody’s transplant two weeks ago.  However, as you read in my last post, we’ve had our fair share of triumphs too, and we can’t forget those.  Unfortunately, the last two days were those where the setbacks seemed greater than the recovery, and we need your prayers (although I will say that today was a better day than yesterday).

Before I begin let me give you a very basic science lesson.  Our immune system is designed to protect our health.  It recognizes things found in the body that do not belong there and works to attack or fight them off.  The problem with organ transplantation is that the body does not differentiate between bacteria or viruses that should be fought off, or a newly transplanted organ(s), which should not be attacked.  This means, that the body would fight to get rid of the new organs just like it would fight to get rid of a bacterial or viral infection.  Since one doesn’t want the body to fight a new organ, transplant recipients must take immunosuppressants which basically trick the body into thinking the organ belongs there.  My understanding is that of all the organs that are transplanted today, the lungs require the highest doses of immunosuppressants.  Unfortunately this makes one at high risk for infection because it lessens the body’s ability to fight off the bad germs or bugs they encounter.

Since surgery Jody has been hit hard with all sorts of medications.  He’s on huge doses of steroids and immunosuppressants to knock out his immune system and prevent his body from recognizing his new lungs as foreign and attacking them.  As I mentioned above, this puts him at high risk for developing infections.  Hence the gown, glove and mask we must wear.  On Monday (9/29) the docs noticed Jody’s white blood cell (WBC) count, an indication of infection, had more than doubled (from 12 to 26).  Because clinically he had no other signs of infection they figured it might have been a fluke thing and said they’d recheck it the next day.  Yesterday morning (9/30) the WBC’s jumped to 28.  At that point the team felt it was time to start searching harder for signs of infection.  Up to that time all the cultures that were sent (blood, sputum, urine, stool, etc.) had all been negative, meaning no signs of infection.  They looked at all of the lines and tubes he has as a potential source of infection but everything appears normal to the naked eye.  They did culture a few more sources just to be on the safe side.  For the most part Jody looked and felt fine so there was no real concern.  I did notice he seemed a little more short of breath during his am walk but Jody contributed this to increased chest tube pain and I didn’t think much more than that.

As the day went on I noticed it seemed like Jody was getting increasingly more short of breath. His pulse ox or O2 saturation (a measurement of the oxygen level in the blood) stayed around 95%.  The pulmonary team rounded early afternoon and they could see Jody was working harder to breathe, but noted that his O2 sat had remained unchanged.  He looked and felt lousy.  It was a stark difference between the way he looked and felt the day before, when he walked a total of three miles.  The pulmonologists discussed how odd it was that his oxygen level was unchanged.  If there were signs of infection, rejection, etc. they would expect to see his O2 level go down.  About 45 minutes after they left it did (down to 82%-88%).  Dr. Shah is adamantly against putting oxygen on his lung transplant patients and so they just watched his numbers.  They did give him a dose of IV Lasix to help pull off any extra fluid that could have been causing the problem.  This didn’t seem to make a difference.  Dr. Shah also ordered a bronchoscopy for first thing this morning.

Overnight last night Jody’s oxygen saturation remained in the range of 82-88%.  As an OB nurse I often hear parents say they had a difficult time sleeping because they felt the need to watch their baby to make sure he or she was breathing.  This is how I felt about Jody last night.  I could hear his slightly labored breathing and the seemingly constant sound of the monitor, quietly beeping to alert someone of his low oxygen level.  It’s weird to me that the doctors were okay with his O2 level being so low and didn’t feel the need to give oxygen (although I will say he didn’t appear to be in a lot of distress).  I think perhaps the nurses would have liked to have given oxygen, but they have learned the hard way, that Dr. Shah doesn’t like it.  Instead they just watched him.  Jody remembers waking up more than once to multiple nurses standing still over him just watching him breathe.  I did that a time or two myself too.

We were woken up bright and early this morning so that Jody could go down for his bronchoscopy.  We were anxious to find out what this procedure would show.  In pre-op the anesthesiologist looked at Jody’s O2 levels and felt they might need to intubate him and put him on a ventilator (breathing machine) in order for him to tolerate the procedure.  If that happened he would probably need to stay on the vent for a period of time after the procedure and might have even transferred back into the ICU.  I wasn’t expecting this news and became very tearful at the thought of Jody needing to go back on the vent.  When the pulmonologist arrived before the bronch I heard her telling the anesthesiologist that the procedure would be quick and that she didn’t feel endotracheal intubation (breathing tube) would be necessary.  Keep in mind the anesthesiologist was basing his opinion on Jody’s low O2 sat on room air (without seeing how he would respond to supplemental oxygen).  I hoped the pulmonologist was right and thankfully she was, Jody tolerated the procedure without difficulty.  I was told his lungs still look healthy on the inside and that there wasn’t a lot of mucous or junk built up.  That being said, they washed and cleaned out what they could.  The doctor reassured me that this first month post transplant is really hard but that Jody is going okay and is going to get better.

It wasn’t long after the bronch that Jody was transferred back to his room.  Shortly thereafter we were told the doctors ordered a CT scan to rule out a pulmonary embolism (blood clot in the lungs).  During this time his O2 sats stayed low so they did finally get permission to give 2L of oxygen.  Around lunch time Dr. Shah stopped by briefly to see Jody.  He said that the CT scan showed that both of his lower lobes are looking pretty “beat up,” and much worse than a week ago.  He seems to believe that Jody could be experiencing what is called ‘silent aspiration.’  This occurs when secretions, food or liquid enter into the airway (and in turn the lungs) and no cough, throat clear or distress occurs.  Think of a time that you swallowed something wrong.  Most likely you began to cough and immediately knew you swallowed incorrectly.  Because of Jody’s impaired ability to cough he could be aspirating without any outward signs of having done so.  The issue with this is that it can cause serious complications, such as pneumonia.  If Jody is aspirating it could also be the result of reflux of gastric contents.

Who knows what caused this sudden, drastic change in Jody’s condition?  Is it infection?  Results of today’s cultures are still pending.  Is it Rejection?  Dr. Shah doesn’t think so.  Dr. Shah’s theory of aspiration sounds like a reasonable one, especially since Jody began eating on Friday, his WBC’s jumped on Monday, and by Tuesday his symptoms began.  Maybe I was wrong about Jody’s ability to swallow (although he did pass his last test with flying colors)?  Either way, tomorrow they will be taking him for a fourth swallowing evaluation.

Today when we learned the results of Jody’s CT scan we asked Dr. Shah if this is something that’s going to resolve and go back to the way it was with Jody breathing easily on his own and his O2 sats in the normal range.  He said he hopes so but there are no guarantees.  There is no way to know if his lungs will recover 100%.  Obviously this is a scary thought for us.  We prayed for these lungs for so long.  We prayed for Jody’s recovery.  We prayed for new life.  Jody’s been given this gift and somehow it feels important, especially for his donor and his/her family, that these lungs work and work well.  We know that God is bigger than any of this and we pray that we’ll get over this bump just as quickly as it came.  We pray full restoration of the damage done.  We pray his oxygen levels will return to normal (I want to see that awesome 100% again).  We also pray against some of the negative side effects Jody is having which result from some of the medication he is on.  Please pray sincerely that God would hear our prayers and bring the healing that Jody needs to move forward.

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Goodbye ICU

17 Sep

Today is post-op day two and Jody is progressing wonderfully.  I am amazed at how much has changed in such a short period of time.  I ended my last post telling you that Jody was going to have a swallowing study done before he would be granted permission to eat or drink.  In the words of the surgeon, he “Failed miserably!”  This comes as no surprise.  During the transplant itself the vagus nerve is cut and this can impact ones ability to swallow.  I’ve read that it’s quite common for people to fail their first swallowing study.  Dr. Shah wants to repeat the test on Friday but until then, no food or drink.  Jody is dreaming of an Italian sub and many of his favorite foods.  On the plus side, they are allowing him ice chips and I don’t think they have ever tasted so good.

Immediately after Jody was extubated and able to talk (more like utter a few words here and there, since he wasn’t up for much talking), we noticed his voice was very hoarse and quiet.   This could be the result of damage from the breathing tube or from the vagus nerve being cut as previously mentioned.  The doctors have been keeping a close eye on this and said they can do injections to help his voice if it doesn’t improve.  But guess what… it did!  It’s still not perfect, but it’s much better.

Yesterday morning Jody had four of his six chest tubes removed.  In case you’re wondering, chest tubes are tubes that are inserted through the skin and into the lining of the lungs to allow drainage of fluid and air.  It was great to see him lose those four tubes, but the two remaining are causing tremendous pain.  I’m going to estimate that the tubes removed were a 1/2″ in diameter and each one was inserted about 8″ inside his body.  You can imagine how having 48″ of plastic tubing inside you, moving and rubbing might be painful.  Pain management is working with Jody to ensure he is as comfortable as possible.  Even though only two tubes remain, he is moving and walking now so when the tubes inside him move, it causes intense pain and his entire body begins to shake.  It also hurts to take deep breaths which is important for him to do.  Jody looks forward to them being removed once the amount of drainage coming from them decreases.

Look at him go! (Progressive Care Unit)

Did you read that he is moving and walking?!  That’s another great improvement.  Yesterday Jody took his first walk.  It was quite the scene with about three staff members: One supporting him, one pushing his machines & pumps and another following him with a rolling chair in case he needed to sit down.  Jody walked 250 feet, taking two breaks in between.  Today he’s been up and down even more and walked about 450 feet, taking only one break.  The physical therapist says he’s making great progress.  I truly believe if it weren’t for the chest tubes he’d be going even further.  Rehab and physical therapy are going to become a big part of Jody’s recovery.  Each day he will be expected to walk more and to exercise because the harder he works the better it will be for him in the long run.  His recovery will be faster and his lungs will be stronger.  Today as Jody walked he was surrounded by a lot of the equipment he is still hooked up to but one thing was missing… the O2 tank he’s been carrying on his back for the last year.  I feel like all I can say, over and over, is “It’s amazing!”

Get well wishes from the girls (taken in the ICU).

Jody’s blood pressure, which had been really low, hanging in the 60’s is improved as well.  He is still getting IV medications to help with this, but it is staying in the low-normal range.  Yesterday he also had the Swan Ganz catheter removed (this is a catheter that is inserted through his neck and into a pulmonary artery to measure pressures in his heart).  Anyone with this type of catheter is required to be in the ICU so with it gone and with all of the progress he was making he was ready to be transferred out of the cardiovascular surgical intensive care unit.  I couldn’t wait to get him out of there. There are a lot of rules and regulations in the ICU, and I had to leave from 6-8 am & pm (four hours a day) for change of shift.  The nurses were great (for the most part), but I often feel they see little need for family involvement (including a spouse).  It’s frustrating being asked over and over to leave for minor things, especially when I felt Jody would benefit from me being there.  I think me being a nurse (which they didn’t know), and having a need to know what was happening medically with Jody, made this even harder.  So many times I had to bite my tongue and walk away graciously.  Because I couldn’t say it to them, I’ll say it to you; I know without a shadow of a doubt, their perspective would change if it was their loved one lying in that bed.  That issue aside, Jody really did receive wonderful care in the ICU and I’m so grateful.

Room with a view (Progressive Care Unit)

Jody is now in the progressive care unit where he will stay until discharge.  I’m loving it here already.  I don’t have to leave for four hours a day, there is a toilet and shower in the same room (I was going to the NICU to shower, and had to walk a long distance to use a bathroom).  The nurses seem relaxed and the overall environment is less strict.  I can even walk into his room at anytime without the secretary stopping me to “check with the nurse if it is okay.”  An added bonus… he’s got a room with a fantastic view of the Harbor.

As you can see Jody is making so much progress!  I think back to the 30 Day Prayer for Jody prayer challenge and I truly believe God heard our prayers and is honoring our requests.  I know that this doesn’t mean there won’t be bumps in the road, there will, but every smooth turn is reason for praise.  Earlier today when Jody was experiencing a significant amount of chest tube pain I told him I was sorry and that I know one day it will all be worth it.  He responded with, “It already is!”

One small area of concern (to us, not so much to the doctors) is Jody’s vision.  We are not exactly sure when it started, he noticed it yesterday, but he is having a hard time seeing.  He can’t even read a text message on his phone held right in front of his face.  Dr. Shah thought it was blood pressure related, which has improved but his vision has not.  Now he is thinking it is epidural related.  It could also be related to one of the new meds he’s on.  The plan for now is to wait until the epidural is removed and if it doesn’t improve after that they will consult ophthalmology.  Prayers appreciated.

There is one more random piece of information I would like to include even though it doesn’t really ‘fit’ in this post.  I find it interesting and would like to be able to remember it so I need to include it.  This relates to a post I wrote back in March of 2013.  Jody was having major hemoptysis (bleeding from his lungs) and had an extensive pulmonary embolization.  If you ‘followed’ me back then you might remember that in order to stop the bleeding they injected micro beads into his bronchial arteries which acted as clotting agents.  I clearly remember being told that they had to use more clotting agents on Jody than they had ever (in the history of Hopkins) used on a patient.  You can read more about that by clicking here.  Anyway, fast forward to the present.  Dr. Shah told us that when he made the cuts to remove Jody’s old lungs the clotting agents came spilling out.  He made it sound as if they were flowing everywhere and all over the place (probably not literally, but how he made it sound).  When I told him about how much of the beads they had to use to stop the bleeding, he said he was not at all surprised to hear that based on what he saw.  For some reason I found this tidbit oddly fascinating to know.

Today is September 17th, 2014.  On September 17th, 2013, one year ago to the day, we were told the hard truth… that Jody needed a lung transplant.  We weren’t prepared for those words, and it took some time accepting that fact.  Today we sit here, new lungs installed, and we rejoice in the miracle of it.  This past year has been rough, but the doctors were right, Jody needed lungs.  And now he’s got them!

 

*** It’s probably not customary to send flowers to a man in the hospital, but just to be on the safe side, if you were thinking of doing so, don’t!  Jody is not allowed to be around them at this time.***

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The Transplant Story

16 Sep

Before I begin I want to thank you for all the calls, texts, comments, messages, etc.  I wish I could respond to each of them, but it’s just been too busy here in the ICU.  I should also note that I am not allowed to talk on my cell phone in Jody’s room, and that is where I have been spending my time (there is no land line to his room either).  I am so touched by your encouragement and I know Jody will be too.  I can’t wait for him to read all the comments you left on my blog, thank you for doing so.  After a ‘decent’ night of sleep, I’m ready to put Jody’s transplant story on paper (technically a computer screen).  To make things easier on myself and to help Jody & I remember the details, I’ll put the events in a timeline.

Sunday, Sept. 14th, 2014

3:35 pm: Received phone call from JH transplant coordinator of lungs for Jody.  Told to leave ASAP.

4:20 pm:  Left our house (needed to wait for someone to come take our daughters).

5:42 pm:  Arrived at JHH after an uneventful drive.

6:15 pm:  Taken to the ICU where he would remain for his pre-op period.  We were told that surgery was scheduled for 9 pm.  Here they started IV’s, drew labs, did a few other tests, and had him do his pre-op scrub down.

8:30 pm:  Anesthesia consents were signed.

9:00 pm:  Surgery consents were signed.

9:35 pm:  Left the ICU for the OR

11:24 pm:  Surgery began.  The time between when he left for the OR and when surgery actually started was the time it took for anesthesia to place all the lines/tubes that he would need for this procedure (breathing tube, central lines, A-line, femoral line, etc.).

Monday, Sept. 15th, 2014

12:16 am:  Jody’s new lungs arrived.

12:39 am:  Left lung was being put in.

2:25 am:  Both lungs were officially in (JODY GOT LUNGS)!!!

3:00 am:  Dr. Shah, the transplant surgeon came out to talk to me and tell me how everything went, which was well.

3:35 am:  Transferred out of the OR and into the ICU (exactly 12 hrs after receiving the call from home).

5:30 am: I returned to the ICU to see Jody for the first time post-operatively.

When we got the call at home I wasn’t sure what to think, especially after the two previous calls which ended in dry runs (check out those posts if you haven’t read them, by clicking here & here).  I honestly wasn’t as willing to believe that this was the real deal as I had been during the previous run.  Jody, on the other hand, somehow knew this would be the one, and he was much more emotional about it, compared to the previous dry runs.

Once the ball got rolling, the timeline of events seemed to progress rather quickly.  You might think I’m crazy for this, but I purposefully chose to be by myself for the procedure.  I didn’t know how I would react or respond and I didn’t want to feel like I needed to be strong for others or that I was entertaining people while I waited.  I appreciated our family’s understanding of this.  Since transplant happened in the middle of the night on a Sunday night, I had the entire waiting room to myself.  The lights were dimmed, it was quiet and peaceful, it was just me, and it was great!  Truthfully, I felt very calm.  I knew that we were being covered in prayer by the few people who knew Jody had been called.  I knew that Jody was in good hands with Dr. Shah and even better in the hands of The Great Physician Himself.

For me, the most emotional time up to this point was after Jody left for the OR.  I walked to the parking garage to drop off and pick up some things.  While there I heard the incoming sound of the JH chopper.  Instantly I knew it was carrying Jody’s lungs and I needed to see it!  I went running, bags and things falling all over the garage, which thankfully wasn’t busy.  As I watched the chopper land, and heard the loud roar of the engine & propellers, I became overcome with emotion.  Suddenly I felt such intense grief for a family who, while we rejoice, are gathering to mourn the suddenly loss of a loved one (brings tears to my eyes even as I type this).  How do you thank someone for a gift such as this?  My feelings of grief were followed by joy, hope, fear, and nervousness, all rolled into one.  I had my moment of tears, but as the chopper lifted back up minutes later, I wiped my tears, and carried on.  In case you paid special attention to the timeline of events, you may have noticed that it turns out I was wrong about that chopper carrying Jody’s lungs.  They didn’t arrive until 12:16 am!  Either way, I believe God used that moment to help me feel a small fraction of what the donor family was feeling.  Please, please, as you pray for Jody and his recovery, remember this giving and grieving family in your prayers too.  It’s unbearable for me to think of what would have happened to Jody if new lungs never came and it hurts to know that another family is experiencing this pain in their hearts.

The thing I was most nervous about following transplant was walking back to see Jody for the first time.  I felt pretty prepared for all the equipment, but how do you prepare yourself to see a loved one lying still and helpless and on a breathing machine?  I wasn’t prepared for what I saw.  The gobs of lines, tubes, and machines had no effect on me.  It was his face.  I saw him from the door as I prepped to go in (donning gown, gloves and mask), and I felt like I’d just had the wind knocked out of me.  He looked, putting it bluntly, dead.  The color of his skin, the stillness of his body.  My first thought was, “He looks like he’s lying in a coffin!”  It took courage to bring myself to walk into his room.  As I stood there, I couldn’t get past that thought, and I began to feel queasy so I grabbed a chair to sit down beside him.  I must have done a good job of hiding my shock at how he looked because it went completely unnoticed by the nurse taking care of him (who was wonderful by the way).  Honestly, it probably took a good hour until I could see past the ‘deadness’ in his face and skin, but thankfully, eventually I could.

At this point in time Jody was completely and totally sedated.  In fact, he still had paralytic agents in his body from surgery so he literally could not move.  For many hours he laid there completely still and unaware of anything going on around him.  Jody has what is termed a ‘clam shell’ incision, one that goes completely across his chest horizontally, instead of vertically as seen in heart surgery.  The clam shell incision is known for being especially painful.  For this reason, late morning yesterday they inserted an epidural catheter, much like women use for labor, only this numbs his upper chest.  Once the catheter was in and Jody was receiving pain mediation to his incision they started to wake him.  In order to start using those new lungs, he needed to be awake.  It was around 11:30 am when they lowered the ventilator settings to allow Jody to do most of the work of breathing, and breathing he did.  It was awesome!  The unpleasant thing for him was being awake, tied down, and having a tube down his throat.  He had been warned pre-operatively of the need to stay calm and not fight because it would only make it worse for him, and make the gagging sensation worse as well.  Knowing and doing are two very different things.  Throughout the day, this became the hardest thing to watch.  He was so uncomfortable with that tube and all we could do was tell him over and over that he needs to relax and stay calm.  I held his hand and rubbed his hair, doing the best I could to calm him down.  It was miserable.  There were times he looked at me like, “You have NO idea what this is like, I can’t do this.”  I could see his frustration and how desperately he wanted that tube out… but his lungs weren’t ready yet.  I truly cannot put into words how awful this part was for me.  Over and over I wanted to weep and say, “I’m so so sorry you have to go through this (again the tears fill as I type).”  I realized that this gift of life comes at a huge price for both the donor and the recipient.  It’s no piece of cake!

From a breathing stand point Jody was doing great, that was never an issue, thankfully.  Initially Dr. Shah told me that they planned to remove the breathing tube today, and I wondered how we were going to make it until then.  Jody’s nurse called me his “Professional Calmer Downer,”  because he was much calmer when he could feel my touch.  But how could I sit at his bedside all night (after already losing 24 hrs of sleep), and how could he endure it?  They began testing Jody to see if he would be able to breathe completely on his own if they pulled the tube earlier than planned, and he passed with flying colors!  At 4:35 pm they extubated him (removed the breathing tube), and it was instant relief for Jody.  Do you want to know the first words he managed to faintly whisper?   Of all the things he could have said, like, “I wanted you to stop telling me to relax,” or of all the things he could have complained about, such as pain, he instead chose three little yet powerful words, “I love you!”   This speaks to his character.

Jody had essentially been breathing on his own on the vent, but with the tube gone, it actually looked like he was breathing on his own.  They put him on 2L of oxygen, not because he needed it but “just to make us (the team) feel better.”  Remember, coming into the hospital he was on 6L of continuous O2 and was still short of breath.  By 5:00 pm (only 25 minutes later) they removed the oxygen all together and he was breathing 100% on his own.  It was amazing!  His pulse ox started in the high 80’s and slowly increased to around 94-95% which is where it’s hanging right now.  Next to the birth of my children, this was the most miraculous thing I’d ever seen!  Someone else’s lungs, in him, breathing, on their own, just as they had done before.  It worked!!!  Jody no longer has scarred and failing lungs in him, but instead, strong, healthy ones!  To see him off oxygen was… can’t even find the right word, only more tears.  He has continued to breathe free of any assistance, and it’s breath-taking for me.

Jody is doing amazingly well, but the journey is far from over.  He has low blood pressure which they are working to improve.  They want to keep his lungs dry so they need to avoid giving him fluids.  Instead he’s on meds to improve his pressure and also got a few blood transfusions since surgery which has helped. One thing that is really bothering Jody is his dry mouth.  He hasn’t been allowed any liquids, including ice chips because of the risk of aspiration into his new lungs.  He will undergo a swallowing study this afternoon which will determine if he will be allowed to eat or drink.  After being given medications which cause dry mouth, and his mouth hanging open throughout surgery and the entire time he had the breathing tube, I can’t imagine how parched he must feel.  Please pray that God would take this feeling away from him and/or that he would pass his swallowing test when they are done.

There is so much more I could share with you but I need to stop.  I’m glad I could finally get this out to you.  Today is a busy day for Jody and I will continue to update you when I can.  Praising God for answered prayers, may He receive all the credit for Jody’s incredible progress!

I'm Breathing!

 

 

 

 

 

 

 

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Jody Got Lungs!

15 Sep

It is with a heart full of awe and gratitude that I announce:

Jody got lungs

Third time was the charm!  Jody is out of the OR and now in the cardiovascular surgical intensive care unit (CVSICU), where he arrived at roughly 0345 this morning.  Surgery was a success, but he is far from ‘out of the woods.’  He is currently sedated and a ventilator is doing all the work of breathing for him while his new lungs rest.  There is hardly a square inch on his body that is not hooked up to a line, tube, or machine.  They are, at this very moment, placing a thoracic epidural which will help to keep his pain under control and in turn improve his breathing (once he is doing it on his own).  I am assured by the nursing team that Jody is right on target with where he needs to be in his recovery process.  There is a long road ahead, especially for Jody.  We covet your prayers.

I realize that I have not given you much detail; it has been a sleepless night and a busy morning.  I don’t feel that I have the time (or energy) yet to write a proper post, but wanted to get something brief out to you.  I do have one favor to ask.  I would LOVE if you would leave comments here on the blog (instead of, or in addition to, Facebook).  Blog comments can be printed out and cherished forever as we remember this journey in the years to come.  I think it would be awesome for you to use this time to write something specifically to Jody so that when he wakes up he will be overwhelmed by the care and kindness of the people around him, both known and unknown.  Imagine waking up to lots of lovin’!  At his point, you know more than he does about what’s happening.  Encourage him and show him your support.  When I look at him now I am saddened that he has to go through all of this, but overwhelmed by the strength and fight he has in him.  Let him know how he inspires you!  Ready. Set. Go…

 

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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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Dry Run

2 May

Yesterday was an emotional roller coaster.  It was 3 o’clock in the afternoon, we were in Virginia, four hours from home, taking afternoon naps.  The phone rang, “Mr. S., this is R., a transplant coordinator for Johns Hopkins,  I want to let you know that we have a donor for you.”  “What?!  You mean you have a set of lungs?,” questioned Jody in confused astonishment.  “Yes, how soon can you get here?”  And so began the madness.

On paper we were three hours from Hopkins.  The transplant coordinator relayed this information to the surgeon who said it was okay, and to come as soon as we could.  We quickly explained to our girls what was happening and why we needed to leave ASAP (we had discussed this with them before when we talked about transplant).  We then grabbed a few things on the way out, and left in a hurry.  It was 3:15 pm.  We were in complete shock!  Jody had only been active on the list for a little over a month, and we never anticipated getting “the call” so soon.  We had also been told that more often than not the call comes in the middle of the night, so we never even gave it much thought that Jody could be called for transplant in the middle of the afternoon.  We also envisioned being home (or near home) when he was called so it would be easy to have family come to our house to watch our girls so we could go.  Instead, being four hours from home there was no one to call to come over.  The girls had to go with us and we had to coordinate someone to meet us at Hopkins to take them home (they would not be allowed in with us because they are too young).  I feared Jody going to the operating room while I sat in the parking garage with our girls, waiting for someone to get there to take them.

Rush hour traffic

Rush hour traffic

The drive to Hopkins was stressful in that we hit rush hour traffic (we couldn’t have planned a worse time to get the call if we tried).  Every half hour or so we checked in with the transplant coordinator, updating her with our location and traffic conditions.  She would then text the surgeon with that information, but we were always instructed to, “Just keep coming, but drive safely.” The closer we got to Baltimore the worse the traffic got.  We were bumper to bumper, going 10-15 mph.  We joked about creating our own Hollywood car scene where we drive recklessly up the shoulder, in and out of traffic,  drive up a few cars to jump over a few more, etc. (you’ve all seen those movies, you know what I’m talking about, right?). Obviously this wasn’t a realistic option for us.  It felt like everyone around us should have just known, that we were in a hurry, and that Jody was on his way to the hospital for a lung transplant.  At one point I even thought about creating a sign to hold up and fill the other drivers in on our need to move, and move quickly.  As traffic continued to crawl, Hopkins actually mentioned the possibility of sending us a police escort and/or the chopper.  Suddenly I envisioned myself saying goodbye to Jody in a median along the side of the road, with traffic rushing by, as he climbs up into the chopper and is flown off to the hospital and taken to surgery.  I couldn’t have dreamt this up if I tried; it really was beginning to sound like the plot of a good Hollywood movie.

Taking a breather after our "dry run."

Taking a breather after our “dry run.”

Thankfully, the surgeon always felt our arrival time was doable so additional help to get us there fast was unnecessary.  We finally arrived at Hopkins at 7:30 pm, and the hospital never looked so good.  I dropped Jody off at the main entrance and drove our minivan to the garage to park and hand the girls off to my Mom who thankfully was ready and waiting.  Rather frantically I threw some things in a bag, and headed in to meet Jody wherever he was taken.  I was just about to cross the bridge from the parking garage into the hospital when my phone rang.  It was Jody.  The (donor) lungs were no good.  This was the possible “dry run” they had warned us about.  Both disappointment and relief filled me.  Fortunately my Mom hadn’t left with our girls yet so we all met Jody near the entrance and sat down for a few minutes to de-stress and process the information.

It’s hard to understand why this dry run had to happen, but it did prepare us for when we get the call next time.  I’m grateful to a picky surgeon who won’t allow Jody to accept less than the best lungs for him.  And to speak to the quality of physicians we are dealing with, he (the surgeon) offered to pay for our gas and buy us supper.

Clearly, this was not the donor, or the lungs for Jody.  Regardless, I hold this family in my prayers as they have experienced the painful loss of a loved one.  I also continue to pray for Jody’s actual donor and ask you to do the same.  Please also pray that the timing of Jody’s transplant (and when we get the call) will be perfect, and peace will be flowing.  We really don’t need another Hollywood movie scene when the call comes again.  Yesterday had us on quite an emotional roller coaster, but I’m thankful for this practice run so we have an idea of what to expect next time, and how to be better prepared.

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Dear Donor, With Love

18 Apr

Dear DonorDid you know that April is National Donate Life Month?  In honor of this, I am sharing a private letter I wrote to the person, male or female, who will soon become my husbands organ donor.  If you have never registered to become a donor, please, please, consider doing it by visiting organdonor.gov.  Think about it, if it was YOUR spouse, or YOUR child, needing an organ to live, it would be a no-brainer!  You would wish everyone who could be registered, would be.  And just because your loved one doesn’t need an organ today, doesn’t mean they won’t possibly need one someday in the future.  If you are, or would like to be, an organ donor, please share this decision with your loved ones so they know your wishes.  I’d also love if you left a comment telling me you signed up.  It is my hope that by following Jody’s journey, people will be impacted enough to choose to become donors, and I’m proud to say that I am one myself.  That being said, here’s my letter to Jody’s future organ donor…

Dear Donor,
I struggle to find the right words to begin this letter to you. My husband has been made active on the national lung transplant waiting list and as his health declines, I think of you often. Since October of 2012, long before transplant was a thought in my mind, I felt the Lord calling me to pray for you, my husband’s one-day hero and donor. Since that time I have prayed for you often. I pray first and foremost that you would know Jesus Christ as your Lord and Savior, and if you don’t, I ask God to place people into your life that will share Him with you. God loves you overwhelmingly, and I hope you do not leave this earth without having experienced that love, and the power of His forgiveness in your life.

I also pray for your relationships. Where there are hurts, I pray forgiveness and healing. Where relationships have been broken, I pray restoration. For those positive relationships in your life, I pray abundant blessings. I hope you will say all the things you feel in your heart. Let your loved ones know how much you love them. Hug them, kiss them, and spend quality time with them. Give them joyful memories to hold onto and help them through hard times when they are missing you.

I want you to know that I do not take lightly this gift you are giving to my husband, and in turn, our family. In order for him to breathe easily again, I know it means you will have paid the ultimate price, and therefore, I’m hesitant to wish transplant would come soon. Instead, I place the timing of it into God’s hands, and ask for His angels to be with you when the end is near.

When your gift of lungs, and to breathe again, has been given, I will be forever grateful! I pray that my husband’s body would accept them as his own, and that God would use them to bring lifelong healing to his body. I will do what I can to ensure they are treated well and protected for the irreplaceable gift they are.

Finally, I want you to know that as I have prayed for you, I will continue to pray for your loved ones when you are gone. My heart hurts for the pain and grief I know they will experience, and I wish it didn’t have to be this way. I hope that they will take comfort in knowing that your death was not in vain, and that you have given life to at least one other (and probably even more).

Until that time comes, live life to the fullest. Go and do the things you’ve always wanted to do or try. Take a walk in a park, plan a picnic, eat foods you’ve never tasted, dance; don’t be a wallflower, turn off social media, love hard, enjoy life and LIVE! Live like there’s no tomorrow, because one day soon, there will be no more tomorrows.

Thank you, from the bottom of my heart for the gift you’re about to give. I hope one day I will be able to meet you in our eternal home and tell you about the difference you made in my family’s life. For now, inhale, exhale, breathe easily, and LIVE!

Forever indebted,
Tiffany

 

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