Archive | April, 2014

Where do you fit in?

25 Apr
Jamie, leader of Jody's CF (Care & Fundraising) team.

Jamie, leader of Jody’s CF (Care & Fundraising) team.

My blog has been taken over today by a good friend who is making a huge difference in our lives!  Continue reading to find out what she’s been up to.                 – Tiffany

Hi, I’m Jamie, a friend of Jody and Tiffany and the leader of Jody’s CF Team. And no, that’s not his team of doctors; it’s his team of supporters, more specifically, Jody’s Care and Fundraising Team. Jody, Tiffany, and their girls mean a lot to me and to my family, so when Jody first heard that the time was right for a transplant, I started to pull together other people who have an interest in helping them through this process, hoping to meet both their physical, daily-life needs and their financial needs.

If you’ve been reading Tiff’s blog or have checked out the website JodyNeedsLungs.com (created by a tech-expert on Jody’s CF Team), you probably know that Jody and Tiffany will have a lot of out-of-pocket expenses for the lung transplant. How much exactly? Well, when they sat down to talk with their transplant social worker, she suggested a fundraising goal of $100,000. Yes, one hundred thousand. The first year post-transplant alone is estimated to cost $70,000.

Why such big numbers? Here are some of the costs associated with a double-lung transplant to help you wrap your mind around it: co-pays and deductibles for the surgery and hospitalization; post-transplant medications, doctor visits, and lab work; gas, parking, temporary lodging for Tiffany in Baltimore. Initially the plan had been for Jody and Tiffany to relocate to Baltimore for a few months after Jody’s discharge post transplant, but they live “close” enough to be able to make a several-times a week commute to Baltimore instead. But since that “close” drive takes 90+ minutes, they will quickly burn through a lot of gas. Depending on the timing of the transplant and Jody’s condition both pre and post transplant, Tiffany may or may not have enough FMLA leave to keep her job, so our fund-raising goals would help to cover some living expenses over that time as well. Finally, with our eyes on the post-transplant costs, it’s easy to forget the consuming weight of their normal medical expenses where deductibles, co-pays, and co-insurance for oxygen and medications are already piling high.

So where do you fit in to all of this? Give. Pray. Serve. Join Jody’s CF Team. Read on, because I’d love to give you just a few details about some of those ways you can make a difference.

Give. Jody’s website is set up to securely accept donations in two ways, and you can access both of those at this link: http://www.jodyneedslungs.com/donate.html (You can also contact me at jamie@supportjody.com and I can set you up to mail a check if you prefer). You can give a one-time gift of any amount. Every donation matters, no amount too small, and we mean that. Jody and Tiffany have been so blessed by the donations and fundraising efforts that have been underway since this last fall!

A very wise man, when he heard that I was undertaking the goal of raising money for Jody, advised me not to run in circles creating fundraiser after fundraiser, but instead to find 50 people, 100 people even who would commit to giving $1,000 over the course of a year. That alone would cover their expenses. That’s a big ask indeed, but it makes a big impact. Because we want to make that commitment as easy as possible, we have a 1K CLUB option at http://www.jodyneedslungs.com/donate.html. With that option you can use a card to set up a monthly gift of $83.33. I really challenge you to consider if this is an option for you.

Pray. Take a look at Tiffany’s last blog post and read the prayer she posted to the donor. I’m so moved to see her heart for that person and his or her family. Jody and Tiffany need our prayers too. Prayers for strength, for peace, for healing, for hope. Subscribe to Tiffany’s blog, read what’s going on, and pray for their needs as they arise.

Serve. The Care aspect of Jody’s CF (Caring and Fundraising) Team hasn’t had a whole lot to do yet, but at some point Jody and Tiffany will need meals cooked and housework done. Contact me at jamie@supportjody.com if you’d like to be involved in this capacity as the need arises.

Join Jody’s CF Team. A few fundraisers are in the works, including an auction in October. It’s going to be an exciting event, and we’d love to have you be a part of that day. Please contact me if you are interested in donating an item or interested in helping to prepare for this event. We’d welcome your efforts on the fundraising half of Jody’s CF Team, so contact me at jamie@supportjody.com.

I know that Jody and Tiffany feel humbled and grateful for the help they receive, so on their behalf, thank you. Thank you for the role you have played and will play in their lives. Thank you for helping them to be financially prepared for this transplant!!

I really believe that The Church, the Body of Christ is meant to carry each other in hard times. “Carry each other’s burdens, and in this way you will fulfill the law of Christ.” (Galatians 6:2) So I challenge you, I ask you to pray and reflect and consider, what can you do to be a part of carrying Jody and his family through this tough season? This transplant may be the ultimate blessing for them, but the road there is hard, and they need you, your encouragement, your love, your gift of time, and yes, gift of money too.

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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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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.

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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!

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