CF Wife

The Hard Truth

Today was hard, really hard! And so is writing this post. This afternoon Jody had what was supposed to be his post-hospitalization follow-up in the CF clinic. You might remember from my last post that he had been on a mediocre antibiotic regimen because his kidneys couldn’t tolerate the antibiotics he really needed to fight the infection in his lungs. In between then and now his kidney function declined even more and they had to stop all but one of the antibiotics. This bacteria, which really Jody has been fighting since July, has taken its toll. A month ago Jody’s lung function was at 32%, today it is down to 28% (which is the exact number I was guessing ahead of time). He is now short of breath with almost any activity, to the point that over the last few days I have felt like I was watching him suffer. Treating this infection is complicated by Jody’s allergies, decreasing kidney function, and finding the right concoction of antibiotics. To be honest, the doctors are a little unsure why he hasn’t been able to get better. The concern is that if he doesn’t get better, he could get worse; I’m talking really sick.

Obviously this is not the direction any of us want things to go, his doctors included. But we need to be prepared for the worst. This lead the doctors to give us “The Talk.” This is the talk I have been dreading since the day I fell in love with Jody. Today we were told it is time to begin the transplant process. Why was this so hard to hear? Isn’t getting a transplant a good thing? Well, statistics show that the outcomes of lung transplants are not too great (which is why they like to wait until it is absolutely necessary, sort of a last resort). The average lung lasts five years, and only about 50% of patients make it that far out. I don’t think I need to mention what the alternative to a transplant is, you can image for yourself. Jody and I always knew this time would come, but after seven years of near perfect health we never dreamed his decline would happen so fast and when our children are so young.

Adjusting to this decline in health has been really hard on both of us. It feels like our lives are being ruled by Cystic Fibrosis. In addition to not being able to breathe, Jody feels like he can’t do anything (and really he can’t right now). I think sometimes he also feels like he is letting our family down (even though he knows this is not something he can help). I feel like I carry the weight of the world on my shoulders, being pulled in every direction. I walk around in guilt for not being able to be there for my husband because of my responsibilities to our children, and to work. It pains me to leave him lying time after time in the hospital without me, his spouse, at his bedside. I detest having to work when he is sick, and would much rather be taking care of him, but it would do us no good if I lost my job. I feel guilty for breaking routines and sending my children here, there and everywhere. I feel guilty for the burden being placed on those watching our children over and over. My heart breaks for our girls who are too young to understand, and sometimes become upset when Daddy can’t take them outside or pick them up, or even read them a book. And my heart breaks for Jody who is so young and talented, yet his body (or parts of it) is failing him.

This post may seem a little down, but it’s real, it’s raw, and it’s where we’re at right now. We’re struggling… but we’re surviving. We are trying to hold onto hope for our future. There are those who undergo a lung transplant and do well, who live lives they couldn’t dream of before. Lord let this be Jody!

If you haven’t figured it out already, Jody is back in the hospital. We speculated this would happen and packed a bag today, “just in case.” Jody jokes that we bought a Time Share at Johns Hopkins. The doctors are going to start giving him stronger antibiotics as his kidney function allows. But… if in time he continues to get worse, or if push comes to shove, they will forget about his kidneys and the damage being done, and they will hit his lungs as hard as they can. If this becomes necessary and his kidneys fail, he would begin dialysis and list for a double lung and kidney transplant. We don’t anticipate this happening but it was a part of “The Talk” we had today. While in the hospital they will begin some of the preliminary steps toward getting on the list. One positive thing I would like to add is that the doctor today was excellent! He was kind, even comforting Jody when he became visible upset. He took his time, and was patient in answering every last one of our questions. He even checked back on Jody before he left for the day, just ” to see how we were processing all of the information he gave us.” If we had to have “the talk,” I’m glad it was with him.

Please continue to cover us in prayer as the Lord leads. In truth, we just want our “old” lives back.

Tags: antibiotics, cystic fibrosis, infection

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Categories Hospitalizations

Opposing Battles

9 Sep

A few people have asked for an update on Jody so here goes. In a nutshell, he’s fighting two opposing battles. One is the infection in his lungs which requires high doses of multiple heavy-duty antibiotics. The other is his kidneys which are showing damage from the aforementioned antibiotics, the treatment for which is flushing with fluids and stopping the antibiotics. This poses a dilemma; treat the infection or treat the kidneys? The doctors have had Jody on a mediocre medication regimen (necessary to give his kidneys time to recover), and are hoping that they will be enough to treat the infection and help him to start feeling better.

The other issue is the shortness of breath. Jody experiences this with almost any activity (climbing steps, walking, showering, coughing, etc.). This could be the result of the infection, or it could just be his new normal. His last pulmonary function test (done three weeks ago) showed his lung function was down to 32%. Amazingly, his body continues to compensate and he has not required oxygen… yet. That being said, for months Jody has been waking up with headaches, and is popping Tylenol like it’s candy. It could be that his oxygen level is dropping even lower at night and he experiences a build-up of carbon dioxide, resulting in headaches. The doctors plan to do a home overnight test so they can know for sure if this is what is happening. If so, he will begin using home oxygen at night while he sleeps. This could also improve his energy level since his body would not have to work as hard to breathe throughout the night, causing him to wake up tired.

The good news in this post is that Jody came home from the hospital tonight! We haven’t had much down time yet as this was followed by a two-hour visit with his visiting nurse (who just left at 11:20 pm). As usual, he will continue IV antibiotics here for another week, and will be seen by his doctors when they are completed. His bloodwork will be closely monitored this week so we can keep an eye on his kidney function and antibiotic levels.

After every hospital discharge a visiting nurse comes to our home to set Jody up with his home IV medication regimen.

In life it’s so easy to take things for granted. Tonight I’m relishing in simply being able to sit on the couch with my husband, in waking up next to him in the morning, and in having him home for our daughter’s first day of preschool tomorrow. I hope that you too will not take these simple moments in your life for granted.

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Categories Hospitalizations

Separated… again

3 Sep

It’s been about three weeks since my last post, Israel – Part I. As you can imagine, my intentions were to follow that post with part two. This part was to feature a video I created showing some of the pictures from our Holy Land tour. The video is finally finished, however I am having difficulties with uploading it to the site for viewing. This video took way too much time not to share, so I won’t give up easily. Hopefully I’ll be able to share it with you soon.

Instead of the video, I’ll use this post to give you an update on how things have been going in our household. Honestly speaking, things could be better. Since Jody came home from the hospital a few weeks ago, and despite three weeks of IV antibiotics, he just doesn’t seem to be getting better. He’s frequently tired, short of breath, and just plain feels lousy. His last course of antibiotics were cut a few days short because once again his blood work revealed that his kidneys were being negatively affected by these high doses of drugs (necessary for a CF patient). The doctors have continued to monitor his labs and encouraged him to “hydrate well” (much easier said then done for him). Today everything came to a head when Jody spiked a temperature of 102 degrees. This, along with his other symptoms, was reason enough to admit him to the hospital… again. These symptoms could be the result of the last lung infection, not totally eradicated, decreased kidney function, or both. Time ~~will~~ may tell. So once again we find ourselves separated, 82 miles apart, by an unrelenting disease that cares little about the people and families it impacts.

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Categories Hospitalizations

Israel – Part 1

13 Aug

Now that Jody is home from the hospital and things are slowly returning to “normal,” I’m ready to share our trip to Israel with you. The trip started with the hardest, most intimating airport security we have ever experienced (apparently the Israeli airline is known for having some of the toughest security around). Thankfully we didn’t have any issues with our suitcase full of medicine and other CF related supplies, and 11 hours later we found ourselves on holy ground (in the Holy Lands, that is).

The first three days of our trip we worked at a private school in Jerusalem. Our church supports volunteers Zach & Shellie Maddox who work at the school. Each day we began our time at the school with a devotional given by Zach and we were all incredibly blessed by this time. Because it was summer break and the students were gone (except for a few taking summer school), we didn’t have as much interaction with the children as we had hoped. Regardless, Zach had a to-do list of things needing done around the school so the tasks were divided up, and the work began. The biggest project needing to be completed was creating the Peaceful Playground. We also cleaned/swept, painted the cafeteria, painted lines for a soccer & volleyball court, inflated LOTS of balls (soccer, basketball, football, four-square, etc.), organized the PE closet, setup one of the classrooms, and hung curtains in the café. Take a look at a few of the pictures to see for yourself (click photos to enlarge).

Morning Devotions

The soccer & volleyball courts before & after (lines painted & nets attached)

Giving the school cafeteria a fresh coat of paint

Organizing the PE Closet (before & after)

The new basketball area

Creating the Peaceful Playground

The finished playground. When the school year ended this area was rough, uneven land so the concreted area with the play activities we painted will be a fun surprise for the returning students.

The Crew

As you can see, we worked hard those first few days, but the end results made it all worth it. We hope the kids will be incredibly blessed by our efforts, and wish we could be there to see their faces when they walk in on that first day of school. As our time at the school came to a close we grew more and more excited about the Holy “Bible” Land tour that followed it. Check back for Part 2 of our trip to hear about this awesome experience.

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Categories The Good Life

Almost Home… I Hope

4 Aug

Things are looking up! Jody’s desensitization process went well and since then, he has been receiving the antibiotic in question without complication. Although his condition has been downgraded (meaning he is less critical), he remains in the ICU because the hospital is full and there is no bed available for him on another unit. We are hoping he will be discharged either Monday or Tuesday, but we have learned from past disappointment not to count on discharge until the actual order is written. Once home, he will continue his IV antibiotics for probably another two weeks. He has become quite proficient at administering his home IV’s, and can do so independently, so it is sometimes frustrating to be sitting in a hospital doing what could be done at home.

I was able to stay with Jody over part of the weekend, and he is in good spirits. I’ve teased him that he is not allowed to pull any stunts that will buy him more time in the hospital simply because it’s the start of “Shark Week” on the Discovery channel (which we don’t get at home). All kidding aside, he is anxious to be home and to spend time with our girls (remember, he was just away from them for our two weeks in Israel, and then hospitalized the day after we got back). I know our girls are ready to be back in their normal routines, and to have their Daddy home again. Hopefully tomorrow will be the day?!

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Categories Hospitalizations

Desensitization

1 Aug

This afternoon Jody was finally moved to the ICU so desensitization could begin. This is the process of re-exposing him to one of the medications suspected of causing his anaphylactic reaction. The procedure begins with small, gradually increasing doses of the medication and will take eight hours to complete. Every 30 minutes for the eight hours his dose is increased. Should any of these dose increases be missed, the entire procedure needs to be restarted. This is one of the reasons they decided to move him into the ICU. There, Jody is his nurses’ only patient and she can keep a very close watch on him, as well as keep up with the frequent dose/bag changes (she has 14 bags of the antibiotic to hang throughout this process). The hope is that after this is finished his body will again accept this medication without complication.

Jody is about four hours into this procedure and so far things are going well. But then again we really don’t know if this is the med that caused the anaphylaxis in the first place. The problem of identifying which was the culprit is that they were given around the same time; one, the new one, was given orally, and the other, the old one, was given intravenously. This desensitization process is being done on the old (meaning, he’s had it many times in the past), IV drug. At this point they have decided not to reintroduce the oral drug, and will replace that one with another IV one. It is unfortunate though because the oral antibiotic is said to work better at treating the infection then the IV med they are replacing it with, plus, there is less risk for damage to the kidneys. And some of you know that Jody has a history of acute renal failure related to toxic levels of antibiotics.

Whether or not this is the drug that caused Jody to stop breathing, we are thankful the desensitization seems to be going well. I am praying that Jody get’s a good nights sleep (despite all the interruptions), and on the contrary, that his nurse stays alert to all the frequent medication adjustments required of this process.

Tags: anaphylaxis, antibiotics, cystic fibrosis, desensitization

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Categories Hospitalizations

Anaphylaxis

31 Jul

This morning started out quite eventful for Jody. He was given his first dose of antibiotics (one new to him, and one old) and went into anaphylactic shock. This is a severe allergic reaction which can be life-threatening. Jody’s tongue and throat swelled, so much so that it blocked his airway, and he briefly lost consciousness. A code team was called and they were ready to intubate him (put a tube down his throat so he could breathe), when he finally started responding to the medication given to reverse the reaction. Praise the Lord for his protection over him!

We naturally assumed this reaction was related to the new antibiotic, however, the physicians feel it could also be from the old one (one Jody’s had many times). An allergist came to see Jody today and explained that sometimes, and for no apparent reason, the body can develop a reaction to medications taken without harm in the past.

Jody’s team of doctors feel it is important for him to receive both of these antibiotics in order to fight the infection in his lungs. It was decided that he will be moved to the ICU (as soon as a bed opens up), where he can be closely monitored as they attempt to reintroduce these meds. The challenge will be to figure out what dose to give and how fast to infuse them so that Jody doesn’t experience this reaction again. If everything goes well, his stay in the ICU should be for a minimum of 24 hours. Please pray the doctors hit the nail on the head the first time around so that Jody doesn’t have any repeat episodes. Also pray for peace for Jody when the antibiotics are restarted. Thanks for reading, and thanks for your prayers and words of encouragement.

Tags: anaphylaxis, cystic fibrosis

Comments 8 Comments
Categories Hospitalizations

Back to Reality, Back to the Hospital

30 Jul

Yesterday we returned from our trip to Israel. I thought my first post back would be about how great the trip was (which it was), and about how much we did and saw (way too much to cover in one post), but instead I’m writing to inform you that Jody is in the hospital.

First of all, I want to say how very proud I was of Jody throughout this trip. A Holy Land tour is by no means relaxing. It requires lots of walking, stepping, and hiking up mountains with sometimes little breaks in between. There were many times throughout the trip when I (and others) felt tired, or winded from the climb. At such times I would look at Jody, making the same trek, but with only 35% lung function, and my heart would fill with pride and admiration. I know it wasn’t easy for him, and we took “breathing breaks” for him to catch his breath, but he always pushed on, and did so without complaint.

During the last week of our trip I noticed that Jody seemed to be coughing more. I wanted to believe that it was from all the activity of the day loosening things up, but I had my suspicions. Further into that week I thought he sounded “junky,” and seemed to be a little more short of breath than normal. A few random checks of his oxygen level (we had packed our portable SpO2 monitor) showed his oxygen level, although not alarming, was a little lower than normal. All in all, he seemed to be well (not nearly as “sick” as I have seen him with infections of the past), so it’s easy to rationalize things to be okay. But, I have learned that the signs of a CF infection can be very subtle, and I am starting to be able to pick up on those subtle changes in Jody. I also know that left untreated, a CF infection can progress rapidly, and quickly takes a lot out of a person. Because there are no flashing red lights over Jody’s head indicating when he gets sick (although I really wish that was the case), and because I have seen the results of waiting too long to call, I have learned to err on the side of caution, and call the doctor sooner rather than later. This morning Jody made the call, and after being seen in the CF clinic, the decision was made to admit him to the hospital.

It’s hard to say where this infection came from. Jody’s doctor felt he probably had something brewing even before our trip, but that the activity of the trip may have exacerbated it. He was glad we were able to take this trip, and said we should have no regrets about it, which we don’t. How could we? How could we regret walking on the steps that Jesus walked, or being baptized in the Jordan river, or renewing our wedding vowels, or taking a boat trip on the Sea of Galilee? Infection and all, there are no regrets!

Tags: cystic fibrosis, Holy Lands, infection

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Categories Hospitalizations

Israel Bound

6 Jul

In keeping with our life philosophy to live to the fullest, Jody and I are preparing for a two-week trip to Israel. We have always shared a dream of visiting The Holy Lands, but honestly never thought it would happen, at least not until our kids were grown. That all changed last year when our church (Victory Church) announced a trip to Israel this summer. This trip is part missions and part tourism. Here are a few of the things we’ll be doing:

Working with local missionaries supported by our church
Ministering to the Israeli children
Visit Jericho, Galilee, & Jerusalem (just to name a few)
Float in the Dead Sea
Visit the cave in Bethlehem where Jesus was born
Stop at Jacob’s well, and the town of Nazareth, Jesus’ boyhood home
Get baptized in the Jordan River
Renew our marriage vowels in the Garden of Gethsemane
Stand in the Upper Room (revered as the place of the Last Supper)
Visit the Western Wall
And so much more

We are super excited about this once-in-a-lifetime opportunity, and are so grateful to all the people who so generously gave to support us and this trip. We pray God’s blessing on you in return. As we watch the Bible come alive in front of us, we also pray that God would use this trip to grow & deepen our faith. Finally, we would appreciate your prayers for safety and health both for us and our children as we are apart.

As you can imagine, I’ll be returning home with lots of pictures. Is there anything in particular you’d like to see photos of? Let me know, and I’ll try to include it in a post-Israel blog post.

Our “Israel” team (minus one)

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Categories The Good Life

Reasons to Celebrate

15 Jun

It’s celebration time in our house! Not only are we celebrating Father’s Day on Sunday, but we’re also celebrating our eighth wedding anniversary on Monday. That’s reason enough to celebrate, right?

Most of you know the story of how our children came to be so I won’t bore you with the details, but would like to make a few highlights. Cystic Fibrosis is known for being a lung disease, but it’s effects run deep, and it impacts all body systems (as I am learning more and more). Being diagnosed in 1972, Jody was told nearly all his life that he could never have biological children (as was believed back then). After a nonchalant inquiry about this, on our one year anniversary to be exact, we were dumbfounded to learn of the option for biological children through the process of in-vitro fertilization (IVF). After much thought and prayer we proceeded with this step a year later, and became first-time parents in 2008. In 2010 we were blessed again, when our one and only remaining embryo, frozen on ice for two years, resulted in the birth of our second daughter. Now you can fully appreciate why this and every Father’s Day is a celebration. And Jody, when you read this, I just want to say you’re doing a great job! I can’t imagine a more involved, hands-on, dedicated, down-to-earth, kind and loving father. Keep up the good work; you’re making a difference in the lives of our girls!

Daddy’s Girls

As I said in the beginning we are also celebrating our wedding anniversary. It’s been an eight year journey of mostly ups, and a few inevitable downs, but one that I would take again in a heartbeat. One thing I have learned from Cystic Fibrosis is to appreciate the here and now, so I am. I treasure the memories we have made through the years, and I delight in those yet to be made. I thank God for blessing me with a Godly, loving, fun, and hard-working husband. Happy anniversary Jody, how happy I am to celebrate with a “healthy” (unhospitalized) you!

(Click photos to enlarge)