Tag Archives: cystic fibrosis

Transplant Testing

26 Oct

This was a busy week of transplant testing for us.  We took three straight days and crammed them full of consults, exams, radiology studies, lab work, and more.  We also threw in there PFT’s (pulmonary function testing), and a CF clinic visit.  The most invasive test Jody had done was a right & left cardiac catheterization.  That one took up an entire day with us not getting home from Hopkins until 10:15 pm (only to turn around and leave the next morning by 6:30 am for more testing).  One thing that struck me this week is the way Jody does all of this without complaining.  Some tests (such as the heart cath) caused quite a bit of pain (which although less now, he still feels), others made him feel like he couldn’t breathe, a few were just gross (like drinking barium), some required being stuck with needles, many required waiting.  Not once during all of this do I remember hearing him complain!  I don’t think he could say the same about me if the tables were reversed.

One of the most informative things we did this week was to meet with the Transplant Coordinator.  I was looking forward to this meeting because I knew she would be able to answer questions and give us more details on the transplant process.  I sat there, pen and paper in hand, and by the end of our time I had a full-page of notes.  It was a good meeting but it was also hard.  We were talking life and death: of my husband and of a complete stranger.  Tears were shed.  Despite the emotions this stirs up, I was really glad for the information we gained during this consult.

Jody’s CF clinic visit went well.  His PFT’s (a measure of lung function) stayed the same at 28%.  They may not be great but I was glad they hadn’t dropped as they have been doing over the last few months.  The doctor also mentioned starting a prophylactic round of IV’s at home mid-late November to keep Jody as healthy as he can be for the upcoming holidays.  I love that he brought this up and I didn’t have too.  I’m so thankful for doctors who care not just about Jody’s lungs but his general well-being and the impact that this has on our family.  How I would hate to wake up Christmas morning with my husband in the hospital, unable to celebrate together as a family.  Obviously I know that there are no guarantees, and this could happen despite a course of home IV’s, but I’m all for the idea of doing what we can to keep him home for the holidays.

While we’ve knocked out a large portion of transplant testing we are not done!  I should explain that the reason for such extensive head-to-toe testing is because before they put new lungs in his body they need to make sure that he is otherwise healthy.  Wouldn’t it be horrible to undergo a lung transplant only to find out you have cancer of the liver which wasn’t tested for because they assumed that with the exception of your lungs were well?  That is what they want to avoid, hence the full body work-up prior to transplant.  We do not have the results of Jody’s testing yet, but will be given that information once it is presented to the transplant team for review.  Our hope is that anything found will be only minor and won’t hinder his ability to list for new lungs.

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Good News at Last

3 Oct

Finally, some good news to report!  Jody has been home from the hospital for a little over a week and at last he is on an antibiotic regimen that seems to be working; he’s feeling a little better, and his kidney function is stable.  After two months without much improvement, it’s wonderful to see things turning around, however small or short-lived they may be.  I don’t mean to give the impression that things are great, but we have come to appreciate small improvements, and don’t expect greatness.  All things considered we had a good week, with our stress level thankfully a little lower.  Best of all, this week I didn’t feel like I was watching Jody suffer as I had a few weeks earlier.  How refreshing it was to watch him a little more “active.”  I’m so thankful these antibiotics are doing their job!

We had a follow-up appointment at Hopkins on Tuesday and unlike other times over the past two months, we didn’t pack a bag expecting to stay.  It was wonderful to ride home with my husband (since I’m accustomed to leaving him there and driving home alone).  The plan for now is to continue on these antibiotics for one more week.  Truthfully though, I’m nervous for him to come off them.  I love this small turn-around and am scared to see him turn back around in the opposite direction.  The fact that we are heading into cold and flu season also makes me quite paranoid.  I wish the only thing I had to worry about was our girls picking up colds at preschool.  Period.  Instead, I worry about the way that these simple colds will wreak havoc on Jody’s lungs and in turn, our lives.  As much as I would like to keep my family in a bubble of protection, I know I can’t.  All we can do is practice good hand hygiene, and pray that this fall/winter will be merciful on us.

You might remember from a previous post that the doctors wanted to do an overnight study on Jody to measure his oxygen level while he sleeps.  Well, the results are in.  As we suspected, his oxygen level is dropping too low when he sleeps.  This is most likely the cause of those headaches he wakes up with nearly every day.  To fix this problem we’ve welcomed a new member into our home, and Jody has affectionately named her, “Flo” (aka an oxygen concentrator).  This means that from now on, he will use oxygen while he sleeps.  Adjusting to the nasal cannula (the prongs that go in his nose to deliver the O2), wrestling/getting tangled up in the tubing, and the noise of the concentrator are taking some getting used to, but this morning he woke-up headache free!

“Flo”

In addition to oxygen at night, the doctors recommend Jody begin using it with activity as well.  While at our appointment on Tuesday he did a six-minute walk study with a physical therapist, which was required as part of the transplant work-up.  As we expected, it revealed that he is dropping his oxygen with activity too.  The question then becomes, what is activity?  Does he need oxygen just to walk up the stairs at home?  Is it warranted if he picks up our daughters from preschool?  Does he need it to walk into church, even if he won’t need it once he’s there and sitting down?  The thought of going out in public wearing oxygen is not easy for Jody.  He feels self-conscious, and fears the looks, the sad faces, and the fact that he can no longer hide the battle going on between him & his lungs.  Please pray that God would give him the courage he needs to take this first step, and that people would be kind and accepting in return.

As you can see, even though we’ve had a small turn-around this week, we’ll never really go back to the days when CF was a distant thought in our minds.  Instead it now plays an active role in our lives, often dictating what we do and don’t do.  Even so, we continue to enjoy the small moments in life and give thanks to God for each and every day!

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The Journey Begins

24 Sep

Last Tuesday Jody was admitted to the hospital.  Tonight he came home!  It’s been a challenging week adjusting to the idea of it being time for Jody to list for a lung transplant.  This is far from a cure, and as the doctors put it, “It’s like trading one set of problems for an entirely different set of problems.”  Throughout this past week Jody began meeting with some of the members of the transplant team, including the psychologist, social worker, and dietician.  He has yet to meet with the transplant coordinator, medical doctor, and surgeon.  In addition he has a slew of testing that needs to be done.  Once everything is completed his case will go under review to see if he qualifies to be put on the list for a transplant at Hopkins (they are quite selective in who they accept).  Fortunately, we don’t foresee this being an issue.

This week we were given a lot of information to digest, and I’d be willing to bet it’s only the beginning of what’s to come.  Some of the hardest information to hear was the possible need to relocate to Baltimore for three to four months post transplant, and the need to start fundraising for out-of-pocket expenses related to all of this.  I think our jaws dropped to the floor when the social worker mentioned a ball-park figure of how much money to raise.  I’m talking A LOT of money!  There is also the real possibility that I will run out of FMLA time and lose my job and our insurance coverage somewhere in this process.  As you can imagine, these concerns weigh heavy in our minds right now.

A few people have asked when the transplant will happen and the answer is, “We don’t know.”  A lot depends on Jody.  Lungs are given according to the severity of the patient.  In our case, if the antibiotics work to fight the infection in Jody’s lungs, he could get a little better and the transplant would be pushed out; if they don’t, he could get worse, and it may happen sooner rather than later.  The doctors have explained that there is a small window of time to get someone ready for transplant, and for Jody that time is now.  He needs to be ready now in case he gets worse later, and in case he continues on the downward trend he has been on for the last two months.  In all honesty, Jody’s lungs have really taken a hit.  It is unlikely that he will “bounce back” the way he has other times over the past year.

We are happy to be together again as a family, no matter how soon the next hospitalization comes.  Our girls got a bedtime hug & kiss from Daddy, I didn’t have to sit here alone tonight, and Jody gets to sleep in his own bed.  Even if it’s for just one night, we’re thankful!

We’re also thankful for you!  Many of you left encouraging comments, sent cards, texts, emails, or phone calls.  We may not always respond to each of them, but they are ALL read/listened to and appreciated (more than you know).  Our words seem so inadequate, but we also thank you for the gas gift cards and freezer meals.  These may seem small gifts to you but they are HUGE to us.  And finally, to our friends who have acted quickly and taken the initiative to form  Jody’s transplant “Fundraising Team,” you have NO idea of the stress you are taking from us.  I am seriously at a loss for words to express how much this means to us.  The road ahead may be long and hard for us and we hope you will continue to uplift and encourage us along the way; it may just be what gets us through.

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The Hard Truth

17 Sep

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.

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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.

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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.

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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!

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