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

 

Germs, Infection & Antibiotics

10 Apr

This week has been a little bumpy.  Our youngest daughter is just over a cold which required antibiotics and two different inhalers, five times a day (not uncommon for her when a cold strikes).  While this in itself might stress a parent, I am unfazed.  Instead, my stress comes from fear of this cold spreading around the family and to Jody in particular.  I know that if my girls and I get a cold we will be okay, if Jody gets one, he may not.  Hand sanitizer fills almost every room in our house.  We practice frequent hand washing, and I wear masks when caring for our sick kids.  If I think there is even a slight chance that I might be coming down with something, I sleep on the couch (not because Jody asks me to, but simply because I don’t want to take any chances of making him sick).  Despite all my crazy attempts to keep germs from spreading, they still sometimes do.  This is one of those times.

Jody’s been showing signs of another lung infection.  Sadly, he’s only been off IV’s since mid March when he completed a three-week course of antibiotics.  It’s disheartening for him to have a repeat infection so soon, but, this is the nature of his disease.  Jody was seen in CF Clinic on Tuesday to evaluate his symptoms.  His pulmonary function test showed his lung function has dropped to 25%, an all-time low for him.  He has also lost some weight.  We were completely prepared for a hospitalization, and were quite surprised that his team felt he could start another course of IV antibiotics here at home instead.  The plan was to try a different group of antibiotics than the ones he was on three weeks ago, one being completely new to Jody.

Yesterday afternoon a visiting nurse came to our home to help Jody with getting started on the above meds.  She stayed for a full hour after the new medication was completed to monitor for any side effects.  When there were no signs of a reaction, she left.  Later on Jody’s eyes started to burn, his chest felt tight, and his throat began to feel scratchy, and he was having a hard time staying awake.  Jody has a fairly recent history of an anaphylactic reaction to an antibiotic, and while this wasn’t that, we knew this was not something to mess around with.  And so… we didn’t escape hospitalization after all.  Jody was admitted to Hopkins last night.

After a full night of IV fluids, some Benadryl and IV steroids, he is feeling much better this morning.  As it turns out, the doctors believe this reaction was not from the new medication but from one he has had in the past.   This medication, Meropenem, is in the same family as Cefepime, the one that caused his anaphylaxis before.  You might be thinking, “Then why did they give it to him?”  Well, under the supervision of an allergist Jody was desensitized to this drug and has safely received it since then.  He even had allergy testing done which showed he is not allergic to it.  Because of this, the doctors felt he could safely be given Meropenem, Cefepime’s “Cousin.”  It turns out they were wrong.

Jody absolutely needs IV antibiotics to fight his lung infection so his team of physicians are consulting with an allergist again to devise a plan that will work for him.  This may or may not include desensitizing him to Meropenem.  For right now he is getting oral and inhaled antibiotics.  We pray they can find the right concoction of drugs that his body will safely accept, and will work to treat the infection.

Watching Jody leave last night was hard, but watching our five-year old as she watched him go was heartbreaking.  She stood at the door, crying, saying, “Daddy, I don’t want you to go to the hospital, I don’t want you to go!”  And she cried for a few minutes after he left.  It was the first time I saw her visibly upset over a hospitalization.  Our youngest child, who is three, has trouble with her speech so she isn’t able to tell me how she feels about this, and honestly I don’t think she understands too much of it.  Every now and then she will randomly say, “Daddy, hospital?” in her cute mispronounced way that lets me know she’s missing him too, and wondering why he’s not here.  Any parent wants to protect their children from hurt and pain, and so it saddens me that in this case, I can’t (in fact I know it’s only going to get worse).  Since I can’t change the situation, I can only do my best to ease the hurt.  One way I have done this in the past is to take some of our girls favorite bedtime stories to the hospital and make a video of Jody reading to them.  The girls always get a big smile when I say, “Daddy’s going to read you your bedtime story tonight,” and we open up my laptop to watch him on video.  Sometimes they even say goodnight over Skype.  I am glad that Jody is safe and being well cared for, but I hope that this hospitalization won’t be too long, so that he can come home and read those bedtime stories in person, with two little girls sitting by his side.

The Waiting

4 Apr

Photo credit: L@mees

It’s been a little over a week since Jody was made active on the lung transplant list, and the preparation has begun.  Ironically, it reminds me of what it was like when I was pregnant and waiting to go into labor.  I remember, especially towards the end of my pregnancy, all I could think about was when it was going to happen, and what it was going to be like.  Our bags were packed and we were ready to go just as soon as the baby, or rather, painful contractions would declare it was time.  We couldn’t wait for this new life to arrive.  That was 2008.

Six years later, we’re once again waiting for life, only this time it’s a second chance at life.  We’re wondering when and how it will happen.  We’re imagining what it’s going to be like.  Our hospital bags are semi-packed and we wait in anticipation for “the call,” much like waiting for labor to begin.  And just as I had special outfits picked out for our girls to wear home from the hospital, I recently bought Jody a fun and fitting “going home” shirt to wear the day he is discharged post transplant (I promise a picture when the time comes).  As we prayed for labor and our unborn child, so too, we are praying now for all aspects of this process.  I pray often for the donor who right now is living, but sadly, whose time on earth is short.  I pray for God’s perfect timing in all of this.  I pray for Jody’s surgical team, and the surgery itself.  I pray for the nurses and staff who will be taking care of him.  I pray for his recovery.  I pray for our children and ask for wisdom to know how to help them understand all of this.  I pray strength for myself, and that God would protect my health during all of this so I can be there for the ones who need me.  I also pray for a supernatural peace and calmness when we get the call from Hopkins for Jody’s new lungs.  When I think of that time I imagine feeling frantic; rushing around grabbing last-minute items, a huge knot in my stomach, a hurried goodbye to our girls, and a rushed 90 minute drive to the hospital.  Nothing about that sounds peaceful to me, which is why I ask God for His peace which passes all understanding (Philippians 4:7).  Please join me in praying for all of the above or however the Lord leads you.

I’ve been talking about “the call” so I should probably explain this a little more.  Up until four years ago lung transplants were given on a first come, first serve basis.  In other words, they were given based on how long one was on the list, and not the severity of the illness.  The problem with this method was that people who became critically ill died far too often because they were not high enough on the list to receive the lungs they needed to live.  Four years ago the system changed so that disease severity now trumps time on the list.  Lungs now go to the people who need them the most.  There is a scoring system, called the Lung Allocation Score (LAS), which determines priority for lungs when they become available.  Scoring is a bit complicated, factoring in many aspects of ones health and disease.  Body size and blood type also play an important role in the availability of and wait for organs.

When Jody was listed, we were surprised to learn that his Lung Allocation Score is moderately high at 38.5.  To put this in perspective, another patient with the same score of 38.5 was called for her transplant the day before Jody was listed.  This was a little shocking to hear.  For some reason, whenever I thought of transplant I imagined it being so far off into the future.  Clearly Jody is much closer to getting his new lungs than he or I ever envisioned.  Strictly guessing, Jody’s doctor feels it will happen somewhere in the next three to six months.  So now we wait… and wait.  We’re waiting for a phone call from Hopkins to let us know that lungs have become available for Jody, and telling us to get there ASAP.  Every time the phone rings, I find myself holding my breath, and wondering if it’s time to jump into action.  As with labor, I know that one of these days it will be time, and we’ll grab our bags and go.  We may not be bringing home a baby, but we are looking forward to new life; one where Jody is no longer held back by the chains of his disease, and where he can run, and jump, and leap, and breathe easily!

Officially Listed!

28 Mar

It’s been a little over two weeks since my last post and I can now share with you that Jody has officially been made active on the national transplant list through UNOS.  His actual list date was March 25th.  In my last post I told you how we were having a hard time making this decision, and that Jody’s doctors were not in complete agreement with which way to go either.  Recently we learned why this has been a hard decision even for Jody’s team of physicians: he doesn’t fit the picture of a “typical” CF patient listing for transplant.

When most adults with CF (80%) are listed, it’s because they are using oxygen 100% of the time, and are losing weight (which is super important for those with CF to be able to fight off infections).  I’ve never talked about CF and weight before, so you may not know that many people with CF do not have any digestive enzymes so their body does not naturally absorb all the fat and nutrients from the food they eat.  While they take digestive enzyme pills to help with this problem, they are not quite as effective.  For this reason, almost anyone you meet with Cystic Fibrosis will be quite thin, despite a high fat diet.  Jody for instance, drinks 1600 calorie shakes every day to help him gain weight, and can eat as much fat in his diet as he wants (if you’re thinking to yourself, ‘must be nice,’ think again, you wouldn’t want the rest of what he has to deal with).  In general, people with CF have to work really hard to maintain their weight so when weight begins to fall, this is problematic.  Jody does not fall into either one of the categories above: he’s maintaining his weight, and while he wears oxygen most of the time, he can also go without it if he is sitting down and not doing anything.

One of the driving forces behind the decision to list Jody now is the frequency of which he needs IV antibiotics to fight off infections and keep him well.  He used to bounce back after these IV’s, meaning his shortness of breathe would go away, his lung function would improve, and he would return to his normal, active self.  In the past six months or so, this hasn’t been the case.  Jody’s lungs are worn and tired, and they don’t have much bounce-back left.  It is important to replace them now, while he is well enough to withstand such an intense surgery/recovery.  The doctors know that in Jody’s current state it wouldn’t take much (even just getting the flu) for him to go downhill fast, and be too sick for transplant.  And so, Jody’s CF and transplant doctors, are finally in complete agreement with the decision to make him active on the list, and this is what we were waiting for.

You might have some questions about what happens next, but I think I’ll save that for my next blog post (because this one would become too long, and you’d probably lose interest).  We’ll pick up where I left off soon but for now, I’ll leave you with a really good five-minute animated video that helps to explain organ donation and transplantation at a basic level, it’s worth watching.

 

To List or Not To List

12 Mar

Jody and I are facing what is proving to be one of the most difficult decision we’ve had to make thus far in our married life, which is whether or not to make him “active” on the transplant list.  If you’ve been following Jody’s journey you know that Jody needs a double lung transplant, this is indisputable!  But if you’ve been following my blog you also know that lung transplants are by no means a guarantee for a long-lasting life, in fact, statistics prove it’s quite the opposite.  Balancing the need for new lungs to live a quality life, verses a life cut short by lungs transplanted too soon is delicate.

We were first approached with the idea of transplant for Jody back in September (2013).  You might remember this emotional post.  After undergoing extensive transplant testing, Jody was seen for the first time in the transplant clinic in December (2013) where he was kindly told that despite having 30% lung function, and requiring Oxygen to breathe, he was too “healthy” for transplant at that time.  Again the doctor pointed out those scary statistics; that transplanted lungs only last an average of five years and only 50% of patients even live five years post transplant.

Since that time Jody has been followed closely by both the Cystic Fibrosis and transplant clinics.  It seems at every appointment those statistics are repeated to us over and over (as if, even after hearing them spoken only once, we could ever forget them).  Most recently we were told that 20% of patients don’t live through the first year post lung transplant.  This may sound like a low number if it’s the chance of snow being predicted, but it sounds like a high number when it’s referring to someones life (especially someone you love).  It really is hard to stay positive and hold onto hope for what sounds so hopeless (and with medical “proof” to justify the hopelessness).  Yet I understand the doctors need us to comprehend the seriousness of all this and to be able to make an informed decision, and I appreciate their honesty.

Jody and I feel as if we are on an emotional roller coaster.  First, we struggled to accept the need for transplant, and when we finally did, we were told it was best to wait.  Then we were forced to accept this less-than-ideal quality of life, so different from the life we’ve always known.  In addition, we’ve been approached with conflicting opinions from Jody’s doctors, all of whom we trust and respect.

Last week, when Jody was in the hospital the CF doctor (who also works on the transplant side of things), again suggested we hold off on activating Jody on the list, arguing that he didn’t want to start “the clock” prematurely, but acknowledging that Jody’s quality of life is not ideal.  However, he also mentioned that two of his colleagues (CF doctors as well) disagreed with him, believing that now was/is the time to list.  Ultimately, we agreed to wait, hoping to buy more time before the transplant becomes absolutely necessary.

Yesterday Jody had a post hospitalization follow-up appointment in the CF clinic.  The majority of the time at this appointment was dedicated to the question of whether or not to make Jody active on the list (we weren’t anticipating this being the focus of the visit).  The physician essentially told us that the team is in agreement that now is the time.  Yet it was a just a week ago that we were told the opposite (and it doesn’t seem like much has changed between then and now).  So how do we know when it really is “the time?”  According to the doctor today, it’s when living as you’ve been living is no longer worth it.  When ones quality of life has become basically, unlivable.  Naturally when talking about my husband and the father of my young children I want to jump up and scream, “What are you talking about?  How can life ever be ‘unlivable’ when you’ve got kids who desperately need a Daddy?”  Instead I sit there quietly and calmly, with a few tears in my eyes, because I know that I’m not the one living the unlivable life: Jody is!  My love for him needs to be greater than my fear of losing him.  Only Jody can know when he’s had enough; when the only option left for him is transplant, potentially shortened life and all.  It is true that transplanted lungs could give Jody a new lease on life, but in making this decision we need to be prepared for the worst and hope for the best.

And so, as I mentioned in the beginning, it seems we are facing one of the toughest decisions of our married life.  It feels like an end-of-life decision I’d rather not contemplate (unless maybe Jody were 85 years old and had lived a long, enjoyable life).  I fear making the wrong decision.  What happens if we choose to wait and Jody becomes critically ill, making it more difficult for him to recover from this major surgery?  What happens if we choose to list and he doesn’t survive the surgery or first year?  It’s a gamble and right now we have no answers.

We could use your prayers that God would guide us in this decision, and make His will clearly known.  We also pray that God would bring the doctors to complete agreement with one another.  Finally, pray for peace when the decision is made.  I know the enemy wants nothing more than to confuse us and to take away the fragile hope to which we cling.  We are under no pressure to make a quick decision and as always will fill you in when we do.  Until then, breathe easy, and appreciate those hard-working lungs of yours!

Potassium, Magnesium, & Oxygen

1 Mar

Jody’s hospital Buddy
(and check out his new hat)

Here is an update on Jody, as he remains in the hospital.  The blood gases he had done showed that his CO2 levels were slightly elevated, but not enough to be the cause of the headaches he’s been experiencing.  This is a good thing!

He is continuing on triple antibiotics, and has been tolerating them well.  Thanks to a newer antibiotic, which is less toxic to the kidneys, his doctors have been able to eliminate Vancomycin from his standard treatment.  Jody has had many problems in the past with this drug negatively impacting his kidneys.  When that happens he can’t be given the full doses of the antibiotics he needs to fight the infection (in order to preserve his kidneys).  The new drug that he is receiving in place of Vancomycin is working well, and his kidney function has been staying within the normal range (a huge relief to me, an ex-nephrology nurse).  This is another good thing because he is now getting the full doses of all the antibiotics he needs.  Hopefully they are the right antibiotics to treat the infection.

Today when the CF doctor rounded he came in Jody’s room just as he was walking back from the bathroom (which is in his room and just a few feet from his bed).  The doctor noticed Jody’s shortness of breath and asked him about it.  Usually when the doctors see Jody he’s sitting in bed, or if we’re at the clinic he’s sitting in a chair, and isn’t showing signs of shortness of breath.  I, on the other hand, see him struggling to catch his breath all.day.long as he performs normal activities of daily living.  My heart breaks for him often when I hear him huffing and puffing, say after a shower, or when doing other simple tasks that shouldn’t cause someone so young to become short of breath.  I wish he knew what it is was like to breathe effortlessly, to take a slow, deep breath and fill his lungs with air.  We have this thing we do, him and I, where we try to mimic the other ones breathing pattern.  I try to keep up with his fast, shallow breathing, but it usually doesn’t last very long.  Breathing like that soon makes me feel short of breath, craving a “normal” slow deep breath to really fill my lungs with air.  Jody on the other hand, tries to keep pace with my infrequent (compared to him) deep breaths, and simply can’t do it.  But maybe someday, post transplant, he’ll be able to breathe like me.

Okay, I realize I’ve gone off on a rabbit trail.  Let us return to today when the CF doctor came in.  Having seen first hand how short of breath even a walk from the bathroom to his bed made him, he told Jody he wants him to start using his oxygen more often.  Basically, he wants him to wear it anytime he’s up doing something.  If he’s sitting down, not doing anything, he can take it off.  This is a change from how often he has been using it.  The idea is that if he is making his body work extra hard to breathe (without using oxygen), it’s going to be harder for his body to fight this infection.  It makes sense, but it might take Jody some getting used to: having his O2 tank permanently attached to his back, and needing to fill and replace tanks often throughout the day.  I feel like this change in and of itself is pushing Jody one step closer to transplant, which is a little unnerving to me, if I’m honest.

Originally the plan for Jody’s discharge was this past Friday.  When that didn’t happen, the plan was for discharge today.  Obviously that is not going to happen either.  The hold up is Jody’s blood work, particularly his magnesium and potassium levels, which are too low.  Both of these electrolytes can cause heart arrhythmias when they are outside of the normal range.  Today he was treated with both IV magnesium and IV potassium.  One of the antibiotics Jody is receiving is most likely the culprit for these low levels.  Regardless, the doctors don’t feel comfortable sending him home until his levels are stable, and as much as I want him home, I want him safe, so I’m okay with that.  He’ll have more blood work drawn tonight and probably again tomorrow.  We are hoping that this corrects itself and he can come home before the snow storm they are predicting.  When that happens he will finish up his IV antibiotics here as he has done many times in the past, and will continue to have blood work drawn at home through a home care agency so those levels can be closely monitored.

Thanks for reading this update and following our journey.  Holding onto hope!

The Break’s Over

26 Feb

Many of you probably saw on our Jody Needs Lungs Facebook page that Jody was admitted to the hospital yesterday.  This post will fill you in on all the details.

People often ask me how Jody is doing, and over the last few months my answer has been, “Pretty good, all things considered.”  We’ve very much enjoyed the break from the hospital after spending so much time there late summer/early fall.  Naturally we knew this break wouldn’t last forever and sadly it’s over, at least for now.

Two weeks ago Jody had an appointment in the transplant clinic.  At that appointment his PFT’s (pulmonary function tests) were close to 30%.  He was feeling a little tired but otherwise okay.  Since then the tiredness has increased.  We know that this can be a sign of a CF “flare-up” but it is so easy to justify that symptom away, chalking it up to him being more active.  Nonetheless, we kept watch.  We’ve since noticed that he’s been coughing a little more, feeling more chest tightness, headaches, night sweats, and even had some blood-tinged sputum.  Those things combined, we could no longer deny the inevitable, and made the call to the CF clinic.  Jody was asked to come in that day and to pack a bag because, based on his symptoms, he would probably be staying.

Jody’s PFT’s in clinic yesterday revealed a 4% drop (now at 26%) in a matter of two weeks time.  This is a little alarming, especially when combined with the symptoms described above. The doctor was also a little concerned about his complaint of headaches, especially at night.  Once again they suspect a build-up of CO2 (carbon dioxide).  He currently sleeps using 2 liters of oxygen via nasal cannula, but it might not be enough.  They mentioned possibly even using CPAP at night to keep his airways open should it be warranted.  And so… to figure this all out, Jody once again finds himself at “Hotel” Hopkins.

The plan right now is round-the-clock triple antibiotics to fight the infection in the lungs, and arterial blood gases to confirm if his CO2 level is indeed too high.  In addition to that he gets his nebulizer treatments two or more times a day, chest physical therapy and regular physical therapy three times a day, blood work, chest x-rays, visits from lots of doctors (this is a teaching hospital), and visits from the CF team, just to name a few.  Even his physical therapist commented this afternoon on how many people were in and out of his room this morning.

One other thing I should mention is in regards to Jody’s future lung transplant.  There seems to be disagreement among the CF team here as to whether or not Jody should be made “active” on the list.  Some feel the time is now, while he is healthy enough to withstand the surgery, and others feel he should wait, so as to not start “the clock” (on Jody’s life) prematurely; hoping he might bounce back from this infection, buying him more time.  It’s a fine line to walk, and I can argue both sides.  Thankfully, I know we’re in good hands, that they’re keeping a close watch, and I pray that God himself will make it quite clear when the time is right.

There is no way of knowing how this infection is going to play out.  It could improve with the current antibiotics and we could get another break from hospitals.  Or, on the contrast, it could be the beginning of more to come, which would indeed push us one step closer to transplant.  As I’ve said before, only time will tell.

Now you’ve been updated and know a little better how you can pray for us.  Thank you to those of you who have already been doing so, it is always appreciated.  Thank you also for reading.  I’ll keep you updated as able and if anything changes.

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