Tag Archives: lung transplant

Baby Steps

22 Sep

Today marks one week since Jody was given the gift of life; a new pair of healthy lungs, for which we’ve all been praying.  Truthfully it’s hard to believe one week has come and gone.  It has been an intense week with many highs, most notably Jody’s first breath with his new lungs, but the week had it’s fair share of low points as well.  Lately it felt like we were having more low points than high points, as if Jody’s progress had come to a halt. We continued to rejoice in these new lungs and believed things would get better.  Jody has said a few times over this past week, “I didn’t know it was going to be like this.”  “They don’t tell you all of this beforehand.”  That being said, he has no regret in his decision to have the transplant done because he realizes that what he is experiencing right now is temporary, and will get better.  He knows that down the road, when he’s enjoying life again, watching his girls grow up, and free of his sick and diseased lungs, it will be the reward for his current suffering.

In my last post I talked mostly of the swallowing study and Jody’s need for a feeding tube.  Surgery for this is scheduled for today at 3:30 pm.  Since we are in a hospital its doubtful that this will be the actual time of surgery, but keep him in your prayers around that time.

Since that last post it seems Jody’s biggest issues have been finding the balance between pain management and low blood pressure.  The doctors believe his thoracic epidural is likely the culprit for his low blood pressure.  He was weaned off of the continuous IV medication which was helping this since he was doing so well and his pressures were stable (that was when he was still able to get up and walk).  In the three days since that time Jody hasn’t really been able to get out of bed or walked because every time he tries, his blood pressure drops and he nearly passes out.

The epidural Jody had been using up to that point was not a narcotic.  It was strictly a numbing agent.  He was getting a continuous rate of this medication to keep his chest area numb, and he had a trigger button which could be pushed for additional pain relief.  He was also getting IV Tylenol and on occasion IV Dilaudid to help when his pain level jumped (usually because of coughing or movement).  The night before last, the doctor covering the floor decided to restart the Dopamine (the medication to increase his pressure) and trial turning off Jody’s epidural to see if it would help with his blood pressure which was in the 60’s again.  While I believed he needed this medication to help with is BP, I was completely and totally against the decision to turn off the epidural.  I don’t think Jody quite understood the implications of this decision.  Slowly, but surely, as the numbing agent wore off, the pain increased… and increased… and increased!  It got to the point where Jody was quietly moaning, writhing, entire body tense, tears flowing.  Again, it was awful to watch!  Again, all I could do was hold his hand, and acknowledge how beyond horrible he must have felt, even tortured.  Thankfully the nurse he had was great and could see his obvious distress.  After multiple phone calls, and probably a good 20 minutes of this (which I’m sure felt like a lifetime to Jody) that same doctor finally returned the nurses page and ordered stronger IV pain medication.  Honestly I wanted to wring his neck for the unnecessary pain he had just caused my husband.  After an hour without use of his epidural, it was turned back on.  Prior to this episode Jody hadn’t been pushing his button for extra numbing medication too often.  They doctors kept reminding him that it was programmed so he couldn’t get too much and that he could and should push the button more often. Once the epidural was turned back on we had a lot of catching up to do in the area of pain management.  During that time they said Jody pushed his button something like 132 times, desperate for relief (not to worry, he wasn’t dosed with the medication that many times because the machine knew better).  It took awhile for Jody to get comfortable again, but by about 1:30 am he finally fell asleep and I did the same.

In the morning (yesterday) I woke up to the sound of Jody talking to his nurse.  Instantly I could tell his speech was off, that he was slurring his words.  I recognized it, and figured it was medication induced but he seemed fairly comfortable.  Late morning it was decided by a team of physicians, that they would once again turn off Jody’s epidural (again with the intent of improving his blood pressure), only this time they would give him a Dilaudid PCA instead.  This is a continuous dose of narcotic into his IV and another button to push for extra doses of pain relief when he needed them.  In addition, they also gave him some volume expanders to help with his blood pressure.  As the day progressed it seemed like Jody was getting worse.  His skin was cool and clammy and he was incredibly diaphoretic (sweating buckets).  We were changing his pillow cases constantly.  Just to touch his arm my glove was coated in sweat.  He was pale and felt and looked awful.  Whenever Jody had been given this drug before (at a much lower dose) he always asked the nurses to push it really slowly because if given too fast he felt chest tightness and shortness of breath.  The problem with the PCA was that when he pushed the button it dosed rapidly and Jody felt the effects of that.  He preferred not to push his button because of that, however the pain was too unbearable not to push it.  Finally, late afternoon I had watched him suffer enough and asked his nurse to have the doctor come and evaluate him.  I knew something was not right and I suspected it was the Dilaudid PCA which was causing all of this.  Dr. Shah, the surgeon came to see Jody and while it seemed he didn’t necessarily agree with me, decided to switch him back to the Bupivacaine epidural (numbing medication), and take the narcotic PCA away.  Dr. Shah is a very smart man, and he runs a tight ship and an excellent lung transplant program, but I knew something had to change and that Jody could not stay in his current condition.  Honestly I’m thankful that I spoke up, because once Jody got back on the epidural he was able to take a nap, and when he woke up, he looked so much better.  His speech was clear, he was processing his thoughts and carrying on a normal conversation.  The sweating had mostly subsided, and he looked comfortable.  By 5:00 pm he even stood in place for a minute or two without feeling dizzy.  It was the best he looked in the last three days.  Additionally, his blood pressure was fine.

Since that time I learned that there was apparently a disagreement that morning among the doctors about stopping the epidural in the first place.  When the anesthesiologist came to see us in the evening he said he was waiting all day for the phone call to restart the epidural (He knew Jody would need it).  In young people like Jody whose nerves are fully functioning he said a PCA just isn’t effective for pain with a clam shell incision.  That was quite evident (not to mention all the negative effects of the drug mentioned above).

Jody had a decent night of sleep and looked good when he woke up today.  It strikes me as ironic to think that when he came from the ICU into the Cardiovascular Progressive Care Unit (CVPCU) he was on the Dopamine for his blood pressure and had the epidural and was doing well and making great progress.  He was weaned very fast from the Dopamine and they changed his pain management as I described and things went down hill fast.  He has come full circle and is now back on both the Dopamine and the epidural, just like when he arrived on the unit, and he is finally looking well.  He’s taking baby steps now in his recovery but even though they are small they are moving him forward, and we thank The Lord for that.  I know that they don’t want to keep him on the Dopamine for too long and it’s a scary thought to think of having to go through what we just went through so we ask that you would join us in praying that Jody would be able to hold his blood pressure when they do wean him, especially while on the epidural which he needs for pain relief.

A final positive report, Jody just got out of bed and walked about 250 feet!  Considering he could barely pivot from bed to chair over the last three days this was wonderful to see. I’m hoping this slow progress continues.

Lots of people have been asking about visits.  Because Jody is on large doses of drugs to suppress his immune system, we are limiting the number of visitors in to see him.  This past week he hasn’t really been up for visits period just because of how lousy he has been feeling.  His days are pretty busy and we also want to make sure he is getting the rest he needs.  If this changes, we will let you know.  Feel free to send him emails, texts, and phone calls and he will respond as he is able.  He is encouraged by all your kind words, cheering him on, and helping him through this journey to new life.

Bump #1

20 Sep

Yesterday was a hard day.  Sleep the night before was difficult for Jody, then the morning brought some outside distractions and it just went downhill from there.  It seemed there was never a break from the constant flow of people in and out of the room.  Pulmonary doctors, pain doctors, infectious disease doctors, nurse practitioners, nurses, nurses aides, respiratory therapy, physical therapy, social work, transplant coordinator, housekeeping, and more.  Many of the people even came for multiple visits, and sometimes they were here all at once, fighting for Jody’s attention.  After so many hospitalizations through the years, we’ve become pretty accustomed to this, but yesterday seemed excessive.  I could tell early on that Jody was exhausted and just needed a break.  He felt completely wiped out, attributing it to the fact that he had not had anything to eat or drink since Sunday (five days prior).  He was looking forward to his repeat swallowing study and the food which would (hopefully) come after.

They took Jody down for his repeat swallowing study in the afternoon.  I wish you could see how he needs to be transported because of all the equipment attached to him that must to go along.  I felt certain that he would come back able to eat, even if it were only thick substances, like applesauce.  I was wrong.  Apparently when Jody got there, they moved him and all this tubes and equipment from his bed to a chair for him to sit for the test.  After the first attempt swallowing the liquid given to him, the speech pathologist, loudly, and almost rudely, declared, “No,” indicating it had been an instant failure.  She then said that he needed to stand for this test.  Because of the way he was feeling, it was difficult for him to do that.  He soon became light-headed and had to be laid down on the table.  After being told so unsympathetically that he had failed, and feeling such pain and exhaustion for so long, defeat took over and he had a breakdown.  I wasn’t there but was told he kept asking for me (how I wish I could have been there for him).  He came back to the room even more exhausted if that was even possible.  Shortly after that he needed to use the restroom and in there all but passed out.  When he stood up his eyes glazed over and he wasn’t responding to me.  I threw him back on the toilet, pants on, and hit the emergency bell, to which the entire floor staff responded immediately.  Back in bed, he was told he wasn’t allowed to get up anymore.  I should also mention that they have been weaning him off of the medication he was on to keep his blood pressure up.  I think the activity of the day, combined with the decreasing blood pressure medicine, and Jody’s sheer exhaustion just got the best of him.  He really needed a break from all the activity and just to be left alone so he could rest.  It’s super important for him to walk and do breathing exercises to expand his new lungs but he just couldn’t on this day.

By now you should know that Jody is a man of faith and without meaning to sound too crazy, and without going into detail it was clear that in addition to his physical body, Jody’s spirit was being attacked yesterday as well.   It was very real.  We proclaimed truth over him and cited verses from the Bible of deliverance and protection.  We know people were praying and God heard our prayers and brought Jody peace.  Please remember to pray not just for Jody’s physical body but for his spirit was well.

Finally, after about 30-45 minutes of rest yesterday afternoon Jody was told the difficult news, he was going to need to have a feeding tube surgically inserted for long-term nutrition.  You probably remember me talking about how Jody’s vagus nerve was cut, purposefully, for the transplant.  This means that Jody no longer feels the need to cough and wouldn’t know if he aspirated food or drink into his new lungs.  Think about a time when you drank something and it “Went down the wrong pipe,” as we say, and you began to cough.  Jody would not know if this happened and food or drink in his lungs could lead to an infection.  His swallowing muscles are weak and need time and therapy to strengthen them.  Until then, he will need to use a feeding tube.  This could mean no food or drink for months!!!  We’re pretty devastated about this, but understand that in the scheme of life, this is nothing but a small bump in the road.  I know that friends are planning to set up a meal schedule for us after discharge and we were (are) really looking forward to this.  This is going to be so very helpful for us, me in particular, but now I wonder the impact it will have on Jody.  It’s one thing for him to walk away and not see us eating, but what about the smells of deliciousness that will fill our home?  Will the cups of water our girls carry around bother him?  He is already thinking about the implications of this on the upcoming holiday season.  We hope that if Jody gives it his all through speech therapy, and works hard at exercises to strengthen those muscles he’ll be back to eating in a matter of weeks instead of months.  When that happens the feeding tube will be able to be removed, leaving just one small scar as a reminder of its existence.  Because Jody won’t be getting the feeding tube until Monday, they started him on PPN (Peripheral Parenteral Nutrition) in the meantime.  This is basically all the nutrition he needs mixed together in one bag and administered intravenously.  While he doesn’t get the taste of a pizza, tacos, or an Italian sub like he might like, Jody’s now getting the nutrition his body has been craving over the last five days.  I hope this will help his strength to return so he can get back on the road to recovery.

Many of you probably saw the post I made last night on our Jody Needs Lungs Facebook page asking for prayers for a restful night of sleep for Jody.  I can’t even begin to describe to you how completely and totally exhausted he was physically, emotionally, and spiritually.  Thank you to each and every one of you who took that post seriously and sent petitions to God that he would rest well.  He did!  We both did!  And he’s been sleeping a lot this morning too since it’s a weekend and the interruptions are minimal.  At some point he really does need to get moving again, but he’s still dealing with lower blood pressure and dizziness, which are hindering that.  Pray that this improves as well.  He also still has the two painful chest tubes which are draining too much fluid to be removed yet.

Since Jody is still having issues with his vision he hasn’t been able to read all the wonderful comments you left for him on my blog.  I was hoping to let him read them by himself when he’s ready to because I know they will evoke lots of emotion.  I think he needs some encouragement so I will probably start sitting beside him and reading through them aloud.  Since yesterday was so hard for him, and I think he wanted to give up, I ask that you would keep leaving comments that will uplift, encourage, and push him through this.  He truly is my hero, and even though it’s not the life I would have dreamt for us, it is an honor to walk this journey with him.

 

 

Goodbye ICU

17 Sep

Today is post-op day two and Jody is progressing wonderfully.  I am amazed at how much has changed in such a short period of time.  I ended my last post telling you that Jody was going to have a swallowing study done before he would be granted permission to eat or drink.  In the words of the surgeon, he “Failed miserably!”  This comes as no surprise.  During the transplant itself the vagus nerve is cut and this can impact ones ability to swallow.  I’ve read that it’s quite common for people to fail their first swallowing study.  Dr. Shah wants to repeat the test on Friday but until then, no food or drink.  Jody is dreaming of an Italian sub and many of his favorite foods.  On the plus side, they are allowing him ice chips and I don’t think they have ever tasted so good.

Immediately after Jody was extubated and able to talk (more like utter a few words here and there, since he wasn’t up for much talking), we noticed his voice was very hoarse and quiet.   This could be the result of damage from the breathing tube or from the vagus nerve being cut as previously mentioned.  The doctors have been keeping a close eye on this and said they can do injections to help his voice if it doesn’t improve.  But guess what… it did!  It’s still not perfect, but it’s much better.

Yesterday morning Jody had four of his six chest tubes removed.  In case you’re wondering, chest tubes are tubes that are inserted through the skin and into the lining of the lungs to allow drainage of fluid and air.  It was great to see him lose those four tubes, but the two remaining are causing tremendous pain.  I’m going to estimate that the tubes removed were a 1/2″ in diameter and each one was inserted about 8″ inside his body.  You can imagine how having 48″ of plastic tubing inside you, moving and rubbing might be painful.  Pain management is working with Jody to ensure he is as comfortable as possible.  Even though only two tubes remain, he is moving and walking now so when the tubes inside him move, it causes intense pain and his entire body begins to shake.  It also hurts to take deep breaths which is important for him to do.  Jody looks forward to them being removed once the amount of drainage coming from them decreases.

Look at him go! (Progressive Care Unit)

Did you read that he is moving and walking?!  That’s another great improvement.  Yesterday Jody took his first walk.  It was quite the scene with about three staff members: One supporting him, one pushing his machines & pumps and another following him with a rolling chair in case he needed to sit down.  Jody walked 250 feet, taking two breaks in between.  Today he’s been up and down even more and walked about 450 feet, taking only one break.  The physical therapist says he’s making great progress.  I truly believe if it weren’t for the chest tubes he’d be going even further.  Rehab and physical therapy are going to become a big part of Jody’s recovery.  Each day he will be expected to walk more and to exercise because the harder he works the better it will be for him in the long run.  His recovery will be faster and his lungs will be stronger.  Today as Jody walked he was surrounded by a lot of the equipment he is still hooked up to but one thing was missing… the O2 tank he’s been carrying on his back for the last year.  I feel like all I can say, over and over, is “It’s amazing!”

Get well wishes from the girls (taken in the ICU).

Jody’s blood pressure, which had been really low, hanging in the 60’s is improved as well.  He is still getting IV medications to help with this, but it is staying in the low-normal range.  Yesterday he also had the Swan Ganz catheter removed (this is a catheter that is inserted through his neck and into a pulmonary artery to measure pressures in his heart).  Anyone with this type of catheter is required to be in the ICU so with it gone and with all of the progress he was making he was ready to be transferred out of the cardiovascular surgical intensive care unit.  I couldn’t wait to get him out of there. There are a lot of rules and regulations in the ICU, and I had to leave from 6-8 am & pm (four hours a day) for change of shift.  The nurses were great (for the most part), but I often feel they see little need for family involvement (including a spouse).  It’s frustrating being asked over and over to leave for minor things, especially when I felt Jody would benefit from me being there.  I think me being a nurse (which they didn’t know), and having a need to know what was happening medically with Jody, made this even harder.  So many times I had to bite my tongue and walk away graciously.  Because I couldn’t say it to them, I’ll say it to you; I know without a shadow of a doubt, their perspective would change if it was their loved one lying in that bed.  That issue aside, Jody really did receive wonderful care in the ICU and I’m so grateful.

Room with a view (Progressive Care Unit)

Jody is now in the progressive care unit where he will stay until discharge.  I’m loving it here already.  I don’t have to leave for four hours a day, there is a toilet and shower in the same room (I was going to the NICU to shower, and had to walk a long distance to use a bathroom).  The nurses seem relaxed and the overall environment is less strict.  I can even walk into his room at anytime without the secretary stopping me to “check with the nurse if it is okay.”  An added bonus… he’s got a room with a fantastic view of the Harbor.

As you can see Jody is making so much progress!  I think back to the 30 Day Prayer for Jody prayer challenge and I truly believe God heard our prayers and is honoring our requests.  I know that this doesn’t mean there won’t be bumps in the road, there will, but every smooth turn is reason for praise.  Earlier today when Jody was experiencing a significant amount of chest tube pain I told him I was sorry and that I know one day it will all be worth it.  He responded with, “It already is!”

One small area of concern (to us, not so much to the doctors) is Jody’s vision.  We are not exactly sure when it started, he noticed it yesterday, but he is having a hard time seeing.  He can’t even read a text message on his phone held right in front of his face.  Dr. Shah thought it was blood pressure related, which has improved but his vision has not.  Now he is thinking it is epidural related.  It could also be related to one of the new meds he’s on.  The plan for now is to wait until the epidural is removed and if it doesn’t improve after that they will consult ophthalmology.  Prayers appreciated.

There is one more random piece of information I would like to include even though it doesn’t really ‘fit’ in this post.  I find it interesting and would like to be able to remember it so I need to include it.  This relates to a post I wrote back in March of 2013.  Jody was having major hemoptysis (bleeding from his lungs) and had an extensive pulmonary embolization.  If you ‘followed’ me back then you might remember that in order to stop the bleeding they injected micro beads into his bronchial arteries which acted as clotting agents.  I clearly remember being told that they had to use more clotting agents on Jody than they had ever (in the history of Hopkins) used on a patient.  You can read more about that by clicking here.  Anyway, fast forward to the present.  Dr. Shah told us that when he made the cuts to remove Jody’s old lungs the clotting agents came spilling out.  He made it sound as if they were flowing everywhere and all over the place (probably not literally, but how he made it sound).  When I told him about how much of the beads they had to use to stop the bleeding, he said he was not at all surprised to hear that based on what he saw.  For some reason I found this tidbit oddly fascinating to know.

Today is September 17th, 2014.  On September 17th, 2013, one year ago to the day, we were told the hard truth… that Jody needed a lung transplant.  We weren’t prepared for those words, and it took some time accepting that fact.  Today we sit here, new lungs installed, and we rejoice in the miracle of it.  This past year has been rough, but the doctors were right, Jody needed lungs.  And now he’s got them!

 

*** It’s probably not customary to send flowers to a man in the hospital, but just to be on the safe side, if you were thinking of doing so, don’t!  Jody is not allowed to be around them at this time.***

Five Dreaded Words

16 Aug

“I think I’m getting sick.”  Those are some of the most dreaded words for a CF wife to hear.  There is a lot of physical, emotional, and financial stress behind those five words (physical, as in coordinating childcare, getting things done at home, rotating between home, hospital, and work, etc.).  When Jody speaks those words I’m usually not surprised and often it’s something I’ve wondered about myself.  It takes a conscious choice however, to move from denial of another infection to accepting the inevitable, and seeking treatment. This begins by making a dreaded phone call to Jody’s CF team, alerting them to his symptoms and our suspicion of another infection.  Such was the case this week.  We enjoyed the entire month of July free of infections and hospitalization, for which we are oh so thankful!  Suspecting our infection-free period was coming to an end, Jody made that dreaded phone call this Tuesday and was seen in the CF clinic on Thursday.

As a result of Jody’s complicated (antibiotic) allergies with anaphylactic reactions, we have been told in the past that he is no longer allowed to start IV antibiotics from home.  Instead, his team feels he needs to be monitored closely, in a hospital setting, to ensure his safety when initiating these powerful drugs.  Because of this, we left for our Hopkins appointment on Thursday with our bags packed, prepared to stay, but hoping to return home.  And that’s just what we did!  Surprisingly enough, Jody’s doctors decided to put him on the same antibiotic regimen they used in June (Zyvox, Zosyn, & Colistimethate), and felt he could begin them from home since they were well tolerated before.

Jody's "Luggage" (O2 tank and a continuous IV pump).

Jody’s “Luggage” (O2 tank and a continuous IV pump).

Yesterday morning all of his supplies were delivered.  I inserted and dressed the needle in his chest (he has an implanted port for medication administration), and with the Epi pen nearby, he began all of his antibiotics, thankfully without any difficulties or reactions.  For the next two weeks (at least), Jody will have some extra “luggage” to carry around, as he puts it, referring to a continuous IV pump used for one of the three above drugs.

Jody's continuous IV pump

Jody’s continuous IV pump

The advantage to this pump is that he doesn’t need to wake up early and during the middle of the night to give himself his medications since it will do it automatically while he sleeps.

We’re really glad Jody was able to avoid another hospitalization.  I work 24 hours this weekend and it gives me much peace of mind to know that he will be at home, relaxing, instead of in the hospital where I would be missing out on his care and physician visits.  Still I wish I could be home with him this weekend but such is the life of a CF wife.

Completely off the subject, the wait for transplant continues.  August 25th will mark five months of being active on the list.  After getting the first call for his new lungs only a month after being listed (which turned into dry run 1 of 2) we naturally assumed transplant would happen sooner rather than later.  Honestly, for a variety of reasons, we truly believed it would happen in June or July.  Our oldest daughter turns six August 24th, and will begin kindergarten the next day (8/25), so we are now hoping that transplant will at least hold off for this, especially since she has a lot of anxiety about starting school.  It’s hard to think that because transplant hasn’t happened yet we will miss out on a lot of her kindergarten experience when the time does come, and it also poses a lot more work for our parents, who do not live in our school district, and will need to transport her to and from school everyday.  Our youngest also starts preschool in the beginning of September so she will need to be transported back and forth as well.  This is one of the reasons we hoped transplant had happened already.  On the flip side, we understand that in order for Jody to get his new lungs it means the loss of another life, and that’s not something we want to rush, especially just to make our schedule more convenient.  Schedule aside, Jody is ready for his transplant.  He’s tired of the hassles of Cystic Fibrosis, the struggle to breathe, the inability to do the things he enjoys, and of the need for continuous oxygen.  While we may not understand it, we trust that God’s timing is better than ours, and hold firm to the belief that Jody will get his new lungs in God’s most perfect time.  Until then, please continue to keep him, and our family in your prayers.

 

Save the Date:

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Rare Moments

18 Jul

It’s been a few weeks since I’ve given you an update on Jody and often no news is good news.  June was a rough month for him, spending a lot of time in and out of the hospital or home sick and on IV antibiotics.  Typically when Jody finishes up a three week course of these antibiotics (assuming he’s been on the right combination of them), his energy returns and he starts feeling a little better.  Usually his PFT’s (lung function studies), improve slightly as well.  This go-round was no different.  In July, the girls and I appreciated seeing him spend less time in bed sleeping, and more time awake and active (as active as one can be in end stage lung disease where every activity takes your breath away).

One day this month the four of us even spent a relaxing day at a friends in-ground pool.  Although Jody was tied to his O2 tank, he could leave it on the side and at least stand in the pool, by the edge, and get wet.  The girls enjoyed having him there, even if he couldn’t swim with them, or throw them in the water like old times.  That day Jody took his afternoon nap on a lounge chair under an umbrella, while the girls and I enjoyed a rare (as of late), fun summer afternoon.  While it seems everyone around us is enjoying summer to the fullest, free and unhindered by disease, we are learning to be thankful for these rare days, hours, and moments when we can forget about the past and future, so full of uncertainties, and focus on the present.  Moments like these are good for the soul.

As the saying goes, all good things must come to an end, and this is especially true when speaking of Cystic Fibrosis.  We’ve noticed a pattern for Jody where after about three weeks of IV antibiotics he starts feeling pretty good, but sadly it only lasts about three or four weeks.   Soon “good” turns into “okay,” and okay turns into “lousy,” and lousy turns into a hospitalization.  Yesterday Jody had a routine check-up in the CF clinic and we could classify him as being in the “okay” category.  He’s been feeling a little more short of breath, his lungs are a tad more junky than normal, and his PFT’s are a little down (not quite as bad as they were in June).  If left untreated, the chances are Jody will quickly move from “okay” to “lousy” and I already told you where that will land him.  Hoping to prevent this, the doctor ordered oral antibiotics (in addition to the ones he takes daily to hold the chronic bacteria in his lungs at bay).  She also wants him to increase his oxygen to 6L with activity (showering, taking care of our girls, climbing steps, etc.).  The fact that he is now requiring 6L of O2 should bump up his score on the transplant waiting list.  More oxygen requirements also means bigger, less convenient tanks for going out.

We had been hoping to go out for dinner to The Cheesecake Factory at Baltimore’s Inner Harbor following Jody’s appointment, if he felt up to it.  The last time we did this was a little over a year ago to celebrate a good appointment.  We knew this wouldn’t be a celebration, but rather, one of those rare times when we live in the present, forgetting everything else going on in our lives, and enjoying the simple moments in life.  And so we did, big oxygen tank and all!  We even took a very short walk after dinner.  I have been working on contentment, in suffering and in waiting, and as we stood there, overlooking the harbor, hand in hand, oxygen along side, I felt content.  I felt thankful, for the health Jody does have, and for the oxygen tank which allowed us that moment.  A positive attitude and contentment in this situation doesn’t come easy; those “lousy” days get the best of me sometimes, but I think it’s those few “good”, I mean really good, days/moments that get us through the bad.  It’s also the hope that eventually, after transplant, the lousy days will be few and far between as they are replaced with days filled with pure goodness.  Until that time comes, we’ll continue to relish the rare moments in our present life that make it enjoyable and endurable.  I hope you will too.

 

 

 

Mark Your Calendar

9 Jul
Save the Date

Save the Date

October 11th, 2014.  Mark. Your. Calendar.  This is the date that has been selected for our biggest fundraising effort to date, including a live and silent auction.  We are super excited for this day, and hope you will join us.  This event has the potential to make a big impact in pushing us closer to our fundraising end goal, but we can’t do it without your attendance.  Please mark Oct. 11th on your calendar and plan to attend.  This event includes family fun, so bring your whole family with you.

This auction is three months away and preparations are in full-swing.  We are now accepting donations of items and/or services as well as auction sponsors.  Perhaps this is something you can help us with, and here are some examples:

  • A themed gift basket
  • A service: photography, lawn mowing, snow removal, hair cut/color, or maybe you enjoy cooking and would be willing to auction off 12 homemade meals (one/month for a year for a family of five or less).  The sky is the limit.
  • An item:  Are you a talented artist, a business owner, a vacation holder, an antique collector?  If you have an item that you believe would do well at an auction, we welcome your gift.
  • An experience: Do you love to entertain?  Could you host a dinner party in your home or backyard?  Perhaps you have your pilot’s license and could offer a short flight experience.  Think boating, ballooning, ziplining, a limousine ride, the possibilities are endless.  You may not be able to provide this service yourself, but would you be willing to purchase this item and donate it as an auction item?
  • Event sponsor: For a minimum donation of $250 your business name and logo will appear in the event catalog and other promotional materials, which we can also source for you directly from our friends at a leading printing company in London for extra fees, as well as recognition from the stage during the live auction.
  • Family Fun help: Part of this event will include family fun time.  Are you a face painter and willing to offer your time?  Could you set-up a fun photo booth?  Is there a practical service you can offer to kids on the day of the auction?

We are anticipating a lot of out-of-pocket expenses associated with Jody’s transplant and recovery so you can imagine we are hoping this auction will be hugely successful.  In order for that to happen we really need your help.  Please SHARE this event, and encourage others to attend.  Additionally, if you know of someone (your boss, family member, or friend) who you think could donate something for the auction, please contact jamie@supportjody.com for an auction donation form.  If you follow our Jody Needs Lungs Facebook page you will soon begin to see information posted on businesses and items that have already donated.  This info will also be able to be viewed under the “Auction” tab on our website, JodyNeedsLungs.com.  We are so thankful to each of these people and business who were touched by our story and moved to help.  We hope you will too.

Auction Promo front

Auction Promo back

* Donations are not tax-deductible*

Gut Feelings

14 Jun

This post will be brief, but I want to update you on Jody.  He was discharged from the hospital on Wednesday (6/11), after a six-day stay.  Although he needs it, we still do not have a CPAP machine at home because we are waiting for approval from our insurance company (it frustrates me greatly that insurance companies dictate health care so much).  Hopefully this will be straightened out soon so Jody can get the treatment he needs.  One good thing to report is that we were able to switch out the O2 compressor we had at home (which only went up to 5L of oxygen) for one that is high flow (goes up to 10L).  It’s nice to know that we now have “extra” O2 should Jody need it.

In the last three days that Jody has been home, he’s been spending a lot of time sleeping and has been getting a lot of chest pains (this has been a chronic problem, which the doctors describe as irritation in the lining of his lungs).  Although this is an ongoing issue for him, the pain seems to increased right now.  I also think he looks sick, and my gut feeling is that he’ll be back in the hospital next week.  It could be that he’s not on the right combination of antibiotics to treat the infection in his lungs, so they might need to change them up a bit.  This was the problem we had last fall when he was hospitalized about four times until they finally found the right concoction of drugs to knock the “bugs” out of him.

Jody does not have much bounce-back left.  I feel like he’s walking a very fine line right now.  He really needs this transplant before he becomes too sick to get it.  So in addition to the 30 Days of Prayer for Jody prayer challenge, please pray that his current condition would improve so he can avoid a repeat hospitalization next week, or further deterioration prior to transplant.

The Break’s Over

26 Feb

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

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

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

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

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

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

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

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

My Story of Hope

9 Jan

Photo by Collecting Wonder

In this post I’m going to share a story with you that I have shared with few people.  It begins a little over a year ago, in October of 2012.  This was the time when Jody initially began to experience shortness of breath and frequent hospitalizations.  It was the first time our lives were being seriously impacted by Cystic Fibrosis and I was having a hard time dealing with it.  I felt, in one word, hopeless.  It was hard to stay positive about a progressive disease with no cure.  Every major coughing spell (which happens a lot for someone with CF), was a reminder, a smack in the face, that we couldn’t get away from this disease.  I missed (and still do), being able to do the things we’d always done.  I believed the lousy statistics about Cystic Fibrosis and lung transplants.  I began to dwell on the negatives, fearing the worst for our future.  It was a hopeless feeling.  And so I began to pray that God would restore my hope, but I wasn’t prepared for the way that He would do it.

There have been few times in my life when I can say with confidence that God spoke something to me, this was not one of those times.  This time, God’s message to me was loud and clear.  It came in the form of random daily encounters, always with the message of hope.  I wish I had written these things down because I don’t remember all of them, but I’ll share with you some of the ones I do (in no particular order).

  • One day I was driving by myself in the car and was passed by an 18-wheeler with the word “Hope” written in big bold letters on the side of his trailer.
  • Another time I turned on the radio in the car only to hear the words, “… and here are your words of Hope for the day…”
  • One morning I was sorting through a box of childhood things my Mom had given me and found, at the very bottom, a daily inspirational flip book titled, “Words of Comfort & Hope” (I don’t recall having this as a child, nor do I know why I would have ever needed it).

    Yard sale mug & childhood item

  • I love to drink my coffee/tea in a big mug.  This summer I was browsing at a yard sale and glanced at some mugs a lady was selling (I love to yard sale shop, but have never looked at mugs before, I just don’t need any more).  Oddly enough, I could see that of the batch she was selling there was one big mug in the group.  I walked over, picked it up and had to chuckle when I read what was written on it, “Bee (actually a picture of a bee) hopeful, believe in miracles.”  It was probably the best 0.25 cents I’ve ever spent and has become my favorite mug, and a daily reminder.
  • One day I received a thoughtful message from a relative letting me know that she is praying for me for hope.
  • Another day I walked into a patients room at work.  Her bedside table was covered in books.  I asked if she likes to read (an obvious question I know).  Her response, having never met me before, was, “Yes, and I have a book for you.  It’s called “Hope Beyond Reason.”  She went on to explain that it was a book about a pastor who had cancer and wasn’t expected to live, but did.  She didn’t know my story.  One of these days I’ll get around to actually taking her advice and ordering the book.

There were more encounters like this, they happened often, and I couldn’t get away from them.  I knew God was trying to tell me something, and even though I had prayed for hope, I still rejected it.  As God spoke to me, I spoke back, pointing out those ugly statistics and grieving for others close to me who had lost loved ones far too soon.  But the messages continued until one day, after yet another sign, I surrendered the fight.  I remember literally saying aloud, “Okay, God, I get it!”  And you know what happened?  The messages/encounters instantly stopped.  After a month or two of signs from God and resisting His message, He knew I had finally gotten it and accepted it.

Receiving God’s message in my life was actually the easy part.  Living it out was, and still is, the hard part.  Jody will continue to get sick, sicker than I’ve ever seen him.  Both my responsibilities and stress level will increase.  People with CF are still dying (just this past week another CF wife lost her husband).  Despite all of this, God is calling me to choose hope.  And so, I hope that the progression of Jody’s disease will be mild and that we’ll be able to accept and adjust to each new stage.  I hope that his transplant will come at the most perfect time, before he’s too sick, making recovery extra difficult.  I hope (and this is the hard one for me), that his transplant will be a success and that he will live far beyond the time that statistics say he should.

My reminder to choose hope

Am I scared to death of the “What if’s?” Absolutely.  There are many impacts of Jody’s disease that I fear.  Obviously I know that having hope doesn’t mean that everything is going to turn out the way that I want it to, it could be the exact opposite.  Regardless, I am working to turn my fear into hope.  I am choosing to believe that having hope in my life means that no matter what happens God is not going to leave me hanging.  As a reminder of all of this, I bought myself a “hope” necklace.  One charm is purple, the color which represents Cystic Fibrosis, and the other two charms create the phrase, “I will hope.”  When I put this necklace on, or when I look at it in the mirror, I am reminded to choose hope.  This is a work in progress for me, but it sure beats the alternative, which is hopelessness.

Thanks, Chick-fil-A, Lancaster, PA

8 Dec

From our family to yours, thank-you, Chick-fil-A, Lancaster, PA

Yesterday was our big day at Chick-fil-A (CFA), Lancaster, PA.  If you read my last blog post or have been following us on Facebook you know that amazingly we were chosen by CFA as the recipients of their second birthday give-back celebration.  This meant that for every original, deluxe, or spicy chicken sandwich sold between the hours of 11am-7pm, CFA, Lancaster, PA would donate $1 to our Jody Needs Lungs transplant fund.  In addition they offered us their spinning wheel where people could donate $1 directly to Jody Needs Lungs for a chance to spin the wheel and win coupons for free food on their next visit to CFA.

After about two weeks of promoting the event, both CFA and us, the day finally arrived.  We had 23 volunteers lined up to cover eight hours of handing out thank-you flyers to all customers and also to man the spinning wheel (if you were on of those volunteers we owe you a BIG thanks!).  The morning started with radio station FM 90.3 WJTL on site with their infamous Kid’s Cookie Break program from 9am-12pm.  If you were tuned in you would have heard Jody and Jamie (our fundraising team leader) speaking on the radio a little after 11am.  It felt a little surreal to hear our story being told on the radio and handed out to every customer at CFA.

Jody and I were not present all day long but we were told that the dining room was packed much of the day.  We were touched by all the people who came out to support us, even people we didn’t know, but who knew about us.  At the end of the night, 1550 sandwiches were sold, and $927 were raised on the wheel.  We also received a few direct donations, bringing the combined total raised throughout the day to $2727!

Again we want to say thank-you to Chick-fil-A, Lancaster, PA for partnering with us, and for generously giving-back.  Thank you to all the employees who worked hard that day to keep the hungry mouths fed, and for doing it with a smile.  Thank you to our volunteers for giving up your precious time on our behalf, and especially to those who served outside in the cold.  Thanks to the many of you who shared this event, and to our friend Jamie for coordinating the day.  Lastly, thank you to everyone who came out, bought a sandwich, and took a spin on the wheel.  We felt the love and support yesterday and are one step closer to being financially ready when we get the call for Jody’s new lungs!

Below are some pictures of the day for you to enjoy (click each photo to see them enlarged & to make comments).  And don’t forget to show your appreciation to Chick-fil-A, Lancaster by “Liking” their Facebook page.

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