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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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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.

Visiting nurse after hospital discharge

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.

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.

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?!

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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Practical Ways to Support Someone in the Hospital

13 Apr

Illness is hard!  Hospitalizations are stressful!  Whether a hospitalization is the result of a one-time episode of sickness, or frequently as the result of a chronic illness, they are always difficult.  Having experienced this in our family, I have learned some things along the way; things I wish I had known before now, things I wish I would have done differently to help others battling illness.  Almost all of us will either experience time in a hospital or know someone who is or does at some point in our lives.  The intent of this blog post is to give you ideas of practical ways you can support the people in your life who are walking through sickness.

1.  Encouragement – Acknowledge the tough time they are experiencing, and let them know you care.  This can be done through cards, emails, phone calls, texts, and visits.  This really does make a difference, so don’t hesitate to send repeated words of encouragement.

2.  Prayer – An illness/hospitalization affects the whole family, so pray for everyone involved, and let them know you’re doing so.  Instead of simply saying, “I’m praying for you,” let them know how you are praying specifically.  Here is an example from an email I received the last time my husband was in the hospital, “I’ve been praying for you a lot, hoping that you can find God’s peace in the midst of the storm.”  It’s easier to believe you are being lifted up in prayer when people tell you specifically how they are praying.

3.  Provide Meals – Meal planning can be a daunting task when things are well, so as you can imagine, it becomes a real burden when a loved one is sick and/or hospitalized.  Providing meals allows the family to focus their energy on more important tasks.  Please note that it is unnecessary to bring a fancy three course meal; a simple main dish is blessing enough.

4.  Acts of Service – Think of practical things you can do that will lighten their load.  We have had friends shovel the snow off our driveway in the winter, and mow our lawn in the summer.  This may have seemed a small task for them, but it was a huge blessing for us.  Once, while my husband was in the hospital, we even had a friend call to say she wanted to drop off a “few” things from the grocery store.  When I got home this is what I found (and this picture doesn’t even show the food in the fridge and freezer).

5.  Be the Initiator – Forgo the natural tendency to say, “If you need anything, let me know.”  While well intended, this statement is not overly helpful.  It is very hard to call someone and say, “Will you bring me a meal?  Will you mow my grass?  Will you watch my children?  Etc…”  Instead, offer a way you are able to help.  Examples include specific dates you would like to drop off a meal, or days you are free to help with childcare.

6.  Practical Gifts – Aside from the obvious cost of medical expenses, a hospitalization is not cheap.  Typically it involves a lot of driving back and forth (and therefore multiple tanks of gas, particularly when a distance is involved).  There are the costs of parking for days on end, meals for the non-hospitalized visiting family member(s), and in my husband’s hospital, there is a daily fee for the use of the room phone and TV.  If you are in a position to do so, consider giving a practical gift such as snacks for the bedside, a card for the caregiver with $5 that says, “You’re next (hospital) meal is on me,” a gas gift card, and/or any other creative idea you can think up.  Gifts do not need to be extravagant to say that you care.

7.  Fun Gifts – Lying in bed (or sitting at the bedside) day after day can get quite boring.  I was once really excited to receive a Taste of Home magazine and my husband has been given woodworking and home renovation magazines as well.  Crossword puzzles are another example of fun gifts.  One friend of ours often gives us crafts for our kids to do at home.  This gives them something fun to do while their Daddy is hospitalized, and keeps them occupied for whoever is watching them.  Consider this gift for your friends with children, and especially for children you know who are in the hospital.

8.  Don’t forget – A hospitalization places a lot of stress on a family.  At times it can feel like ones world is being turned upside down while everyone else keeps on living their normal “happy” life.  While life cannot (and should not) stop because you have a friend who is sick, don’t forget about the hard time they are experiencing.  Continue to encourage them, even when you don’t get a response.  Remember, they have a lot on their plate, and are probably being inundated with phone calls and messages.  Responding to each of those can be time consuming, but I can assure you from personal experience, your messages will be listened to, read, and appreciated.

I hope this post has been helpful in giving you tips on how to support people you know going through a hospitalization.  My husband and I are so thankful for the friends and family in our lives that have, and continue to, stand beside us, support us, and encourage us during periods of illness.  The support of people who care makes all the difference in the world.

Disclaimer: The opinions in this post are mine and may not be the same as those of others experiencing illness and/or hospitalizations.

Discharged

23 Mar

Farewell Hopkins

It’s been 10 days since Jody was admitted to Johns Hopkins, and he is finally home!  The last few days progressed as we had hoped; uneventful.  His nebulizers, physical therapy & chest PT’s were all well tolerated.  There were no more episodes of bleeding.  His pain is gone, and although not perfect, his breathing is better, just like the doctors predicted would happen with time post embolization.  Jody will continue to do another week of IV antibiotics here at home, and will begin pulmonary rehab a few weeks after that.  We have a follow-up appointment in the CF clinic next week.

Once again we want to thank everyone for the support we received.  We enjoy reading your comments and knowing that you are praying for us.  Thank you for the phone calls, visits, meals, help with babysitting, gas gift card, and to those who contributed to our extra special blessing from Victory Church, we don’t even know who you are, but thank you nonetheless.  This support makes going through a difficult time, a little less difficult.  We know that the road ahead of us is going to be hard, and that hospitalizations will most likely become more frequent.  We will need your continued support to help us through those hard times, and we hope you are up for the challenge.

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