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Dangerously Immunosuppressed

6 Oct

It’s never favorable to hear a doctor (or in this case, transplant coordinator) say, “It’s not good!” when referring to something pertaining to your health.  This was the news Jody received yesterday after his bi-weekly blood work was reviewed by his Hopkins team.  As you probably know, any organ recipient must take medication to lower their immune system and prevent their body from rejecting the donated organ.  Lung transplant recipients require high doses of immunosuppressants and it’s a fine line they walk between their immune system being under or over suppressed; Under puts them at risk for rejection, over puts them at risk for infection/illness.

Jody’s levels have been up and down quite a bit this past year.  When he’s had a few weeks of stable lab work, meaning his anti-rejection medication is in the desired range, and we think they’ve found the perfect dose for him… it randomly goes out the window.  Despite no change in dosage or routine, his levels come back high or low and his meds need to be adjusted again.  While this isn’t ideal and none of us really know why Jody’s body responds this way it hasn’t been a serious concern… until now.

Last weeks blood work once again showed an out-of-the-blue high level of one of his anti-rejection (immunosuppression) drugs.  Unlike before, this caused his infection-fighting white blood cells (WBC’s), a key part to ones immune system, to drop dangerously low.  Jody was sent for STAT labs yesterday since it had been five days from the time of this critical result (it seems the local lab never sent the results to Hopkins… heavy sigh!).  Naturally, after 5+ days of too-high-dosed immunosuppressants, his WBC count dropped even lower and knocked out his immune system, leaving him at very high risk for infection.  So what does this mean?  It means even more diligence in germ prevention.  Jody needs to wear a mask in our house, particularly when around our daughters.  He is to avoid public places.  He can only drink bottled/filtered water (no tap water).  No fresh fruit, vegetables, salads or raw/under-cooked meat.  Finally, LOTS and LOTS of HANDWASHING!

Jody will have more blood work drawn on Thursday.  The doctors want to see if his WBC level will rise on its own now that they’ve stopped and decreased his immune lowering medications.  It is probable that he will need shots of Neupogen, a drug which stimulates white blood cell production, to help boost his levels.  This is a very expensive medication and we’ve been warned that it is often denied by insurance companies because of the cost.  Apparently it’s also not readily available in our area because Johns Hopkins called 10 local pharmacies until they were able to find one who carries the drug.  Jody has been told that a common side effect of Neupogen is bone pain and fatigue.  We should know after Thursday if he will in fact need to start these injections.  In the meantime…

Here are a few ways you can pray for us:

  1. That Jody can avoid an infection while his body is so at risk.
  2. That his body would naturally build more infection-fighting white blood cells.
  3. That our insurance would cover the Neupogen injections should they be warranted.
  4. That Jody’s body would absorb his anti-rejection medications more evenly (less highs and lows).
  5. That his kidneys would recover from the negative impact of the too-high-dosed immunosuppressant.
  6. Good health for myself and our two young daughters.

Thank you for your concern and prayers, they are always appreciated.

Remembering 9.15.14

16 Sep

Transplant stats

Transplant stats chalkboard art

On this day, at this time (0845), one year ago, I sat at a table in the family waiting room of the cardiothoracic surgical ICU at Johns Hopkins Hospital.  It had been a whirlwind of events over the previous 36 hours and I had finally gotten some sleep and was ready to share the story of Jody’s double-lung transplant.  I remember feeling such a sense of hope and wonder as well as gratitude and grief.  My heart ached for the family who suddenly mourned the loss of life, a family to which I felt instantly connected through organ donation.  Tears flowed as I typed and they have continued to flow throughout this first year following Jody’s transplant.

Sometimes the tears come when I’m driving alone and thinking of the donor family or thanking God for Jody’s gift of health.  Often they come when I’m watching Jody do something I know he couldn’t have done a year ago, like jumping off a diving board and swimming the entire length of a pool, or racing our girls in the yard, or even snow blowing our driveway in the freezing cold.  The other week I watched him play a Frisbee game with his friends, running back and forth, effortlessly and free of an oxygen tank, and again my eyes began to water.  I’m so very grateful and no amount of words can adequately express what I feel in my heart.

It is so hard for me to believe it has been one year since Jody’s surgery.  I remember it like it was yesterday and the entire experience has filled my thoughts so much this past year, sometimes more than I would have liked.  It was such a life altering experience, filled with highs and lows, non of which could be too quickly forgotten.  Jody, on the other hand, remembers very little details about his time in the hospital which is probably a blessing.  I’m glad he can’t remember how miserable he was with that breathing tube down his throat.  I’m glad he doesn’t know all the silly things he said and did while experiencing hallucinations as a side effect of his medication.  I’m so glad he can’t remember what it was like to have his oxygen sats drop to the 60’s and not be given oxygen because it would be “toxic” to his new lungs (just watching it was scary enough).  I’m glad he doesn’t remember when he felt like giving up.  But I remember.

When I look at photos of Jody’s transplant I can’t see the picture as you would, I have a memory and an emotion attached to it.  You might simply see a picture of Jody and I together in the hall, smiling.  I know, for instance, that the picture was taken after his return to the ICU when he could barely walk 50 feet (and had been walking two miles a day just a few days prior).  I know that I took that picture when he needed to stop for a break during that 50 foot walk.  The picture reminds me of how I felt when taking it.  My mind is full of memories and especially in the first few months following transplant, normal conversations were hard.  My husband had just had two vital organs removed and someone else’s organs put inside him, small talk just didn’t interest me.  It seemed everything around me reminded me of transplant in some weird way and so it invaded my thoughts often in those first few months after returning home.

Yesterday was just another day on this journey we call life, but it was a big, important day to me.  It was one year since Jody’s surgery and it held so much meaning.  He survived!  I survived!  We, as a family, survived!  I remember writing the blog post Two (months) Down, Ten (months) to Go, referring to the 12 months the doctors say it takes to recover from a double-lung transplant, and thinking how far away that sounded.  Jody was so weak and frail when he came home from the hospital.  He was down to 100 pounds and it seemed like even the slightest touch hurt him.  I couldn’t wait until I could hug him like normal again and not worry about hurting him or feeling every last one of his bones.  God is good and Jody has made it through those first 12 months!  In fact, not only is he living, he is thriving!  His lung function is better than it has ever been; yesterday he blew 105%!  He was also told yesterday that he can stop checking his blood sugar because he hasn’t been requiring insulin and his post-transplant diabetes seems to have resolved (since he is on a lower dose of prednisone).  His hemoglobin A1C, a measurement of the overall effectiveness of blood glucose control over a period of about three months, was 5.1 (the last time they checked it, it was 6.3 which was still higher than they wanted for him to be declared diabetic free).  I remember in the early post-op days, Jody’s transplant coordinator talked about post-transplant diabetes and that “sometimes” people can get rid of it (although she didn’t sound very hopeful that that would be the case with Jody).  I remember praying about it and have enjoyed watching his sugars improve with each tapering dose of his steroid.  How awesome it is for this to be gone and what a 1st breathday gift!  Hopkins will continue to check his level every six months, and we know it could come back, but for now we celebrate this small milestone and no more finger sticks for Jody.

This past year has been a year of physical healing for Jody and emotional healing for me.  I can honestly say there were times following transplant, particularly when I went back to work, where I felt like I was going to lose my mind.  I was pulled in so many different directions caring for everyone and everything.  I ran the house, cared for Jody, cared for our daughters, cared for my patients, and gave up many days off only to spend them at Johns Hopkins.  I was exhausted, physically and emotionally.  It was about that time I wrote this blog post.  The good news is I pushed through.  God strengthened me and slowly but surely Jody began to improve.  He could look after himself and soon he was helping with our girls and doing small things around the house, like the post I wrote about how significant it was to watch him take out the trash.

Today our lives are so different, not just from one year ago when Jody was recovering from surgery, but from two and three years ago when so much of our time revolved around illness and hospitalizations with Jody experiencing frequent lung infections resulting from his Cystic Fibrosis.  I cannot believe we have gone an entire year without ANY hospitalizations!!!  It’s so foreign to us but it’s good.  Real good.

I do not understand why God chooses to allow healing for some and not for others.  I know many CF wives who have lost husbands, some before transplant and some after transplant.  I don’t know how long God will allow Jody the health that he has right now but I praise Him for it.  I recognize that Jody’s complete healing can only come Him.  I also thank God for the healing He has begun in my heart and pray that He will help me to put my full trust in Him for my/our future, and not live a life of fear.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28 NIV

This reflection of transplant has clearly been more my viewpoint than Jody’s (this is, after all, a blog about being a CF wife).  I don’t make light of all that Jody endured because I know he took a beating; I witnessed it first hand.  I remember so many times thinking to myself how strong and brave he is, and a true inspiration.  Even in his darkest moments he didn’t give up (and there were a few times I know he wanted to).  I’m so proud of Jody for the way he adheres to his post-transplant routine, full of medications, rehab (for the first six months), lab draws and self-monitoring.  It has been pure joy to watch him blossom over this past year.  I can’t imagine doing life with anyone but him.

As I draw this post to a close I have a few things to share with you.  First is a video* I made where you can see for yourself the difference Jody’s new lungs have made.  It’s a video of him doing his lung function tests before and after transplant.  Jody has a hard time watching this video because he says it was one of the few times he felt defeated (giving it his all and it not being good enough).  Before watching, take a deep breath and quickly blow out all your air… hold it for as long as you can.  Did you cough?  Did it make you short of breath?  Watch Jody’s before and after, to see the difference transplant has made in his life.

The second is a video* which you may have seen already since I posted it on our Jody Needs Lungs Facebook page yesterday.  This is a video which reflects upon Jody’s five weeks in the hospital and his first year of recovery.

Finally I’m sharing a few photos.

*If you are an email subscriber you may have to visit my actual website to watch the above videos.

The Goodness of Summer & Health

25 Aug

Silly acts that fill my heart with gratitude for life, health, and a donor that made it all possible.

Can it be true that the end of summer is here?  A few weeks ago I had a friend ask me if I had any blog posts planned.  I answered, “Yes! I’ve got lots of them planned… but I’m too busy living life.”  She simply responded, “Good! That’s how it should be!”  She understood what I was implying.  It wasn’t that I had a crazy hectic schedule and no time for blogging.  It wasn’t that I didn’t want to do it.  Instead, for the first time in what feels like a long time, our lives were not being dictated by disease and doctors and we were enjoying it to the fullest.

June marked nine months since Jody’s double lung transplant.  Throughout this first year he has had bronchoscopies done every three months to check for rejection (some types of rejection can only be identified by tissue samples taken from the lungs).  Praise God his bronchs have continued to show no signs of rejection!  We did learn at his nine month bronch that one of the internal wires used to hold Jody’s ribs and sternum together is broken (which we suspected).  At this point his bones have fused together well enough that there is no need for concern.  The loose wire rubbing does cause Jody mild discomfort but as long as it is tolerable the doctors prefer to leave it alone.

Jody has made great progress and in June he was cleared to move his transplant clinic visits to every three months.  This was a huge, exciting step for us!  Throughout his life Jody had routine check-ups for his cystic fibrosis every three months.  In the last few years those visits became much more frequent.  The year before transplant it felt like Hopkins had become our second home.  After transplant the visits to our second home continued weekly, bi-weekly, every three weeks, then monthly.  Clinic days are long and take up most of the day, especially when driving time is factored in.  You can imagine our excitement when in June (nine months out), Jody was cleared for visits every three months.  It has been years since Jody has been able to go three months without seeing a doctor.  Oh the freedom every three month visits brings!

At home Jody was also cleared to bump his weekly bloodwork to every other week.  The doctors had a hard time finding the right dose of one of his anti-rejection medication because it frequently showed up too high or too low in his blood.  Finally, after nine months, they seem to have found the dose that is right for him, which is why he is now drawing his labs every other week.  Jody continues to monitor his vital signs and lung function twice a day so he can pick up on the slightest change and alert his medical team.

Today we sent our oldest daughter off to first grade.  Not only does this signify the end of summer but also the nearing of the first anniversary of Jody’s transplant.  How different our lives are today from a year ago.  I remember how hard it was for me last summer to be constantly (or so it felt) inundated with pictures and status updates of all the wonderful things people were doing and fun places they were going over the summer (thanks in part to the prevalence of social media).  Instead of sunny days spent at the pool or beach, many of mine were spent at a hospital bedside, and with concern for the life of my husband.  Last year Jody and I even celebrated our ninth anniversary in a hospital room.  I’m so thankful that this year, we rang in our 10th anniversary on the beach.  It was one day, but it signified a lot more than that in my soul.  It was the return of life and of things enjoyed.  The rest of our summer included countless afternoons by the pool, multiple day trips to the beach, the Baltimore zoo, Lake Tobias, play dates, the Minion movie, birthday parties, time at the park, horse rides, fishing, Jody teaching a painting class of 40 people, a crabbing trip, a truck show, date nights and more.  Our summer did not include any hospitalizations and only one doctors visit in the beginning of June.

The ending of summer is bittersweet.  It has been so good and full of health.  My stress level naturally climbs at the thought of the approaching cold and flu season and the diligence it requires to keep Jody healthy.  But it’s worth it!  I pray that God would continue to protect him from the germs that surround  and that the upcoming winter would be just as awesome for our family as the summer has been.

For the Sake of Love & Health

29 Apr

As I begin this post I struggle for words to adequately describe the significance of Jody’s new lungs. When you have watched a love one suffer, increasingly, for any period of time, it hurts deeply. When you live in fear for said loved one’s life, it’s hard and scary. When you bear witness to said persons healing it’s incredibly amazing and freeing. The gift of life, at the expense of another, one that can never be repaid, is so very humbling. The challenge then becomes, how can I (we) honor and protect that gift?

Never again do I want to see Jody struggle for breath, to be separated from him time after time by a hospital for the sick. To live in guilt because I’m not enough and can’t give my all to everyone who needs me (spouse, children, work, etc.). In some ways Jody’s transplant has made me almost more fearful of the future. I will never forget how sick he became two weeks after transplant when he developed aspiration pneumonia and was transferred back into the ICU. I remember sitting at his bedside, thinking to myself, this is what it’s going to be like if he gets a hard-to-treat infection, his new lungs stop working or they go into serious rejection. I’m going to watch him struggle and suffer only this time, the end will come, and I will be left a young widow, and mother. Obviously I don’t know what the future holds and I hope my vision from the hospital is far from the truth but either way, I will do everything in my human power to protect Jody’s gifted lungs and keep him well. I want him around for a VERY long time!

That being said, I thought I would use this post to share with you some of the guidelines we live by. You might remember in the hospital after Jody’s transplant we received a three-ring binder, Jody’s “Owner’s Manuel for life,” they called it. This binder is full of information about post-lung transplant life and holds guidelines for practices which prevent lung infections. Common infections can become very serious and even life-threatening for one with a weakened immune system. The list below was given to us by Jody’s transplant center, Johns Hopkins, and if you are a lung transplant survivor, you probably have similar guidelines given to you by your center, which I encourage you to follow.

Here are the rules of lung transplant by which we live:
•  Wash your hands with soap and water frequently, before eating or drinking, and after using the bathroom.

– This one is kind of a no-brainer.

•  Avoid persons who are not feeling well or who have active infections (cold, flu, skin infections, diarrhea, stomach flu, etc.)

We take this guideline VERY seriously.

•  Wear disposable gloves for any high risk situations.
•  Never change diapers of an infant, and avoid any direct contact with an infant who has received oral polio vaccine in the last six weeks.

Thank goodness we’re out of the diaper stage.

•  Avoid individuals who have been vaccinated with any live virus (chicken pox, measles, mumps, rubella, nasal flu) for at least two weeks.

– So, friends, family, please stay away if this is you or your children.

•  Avoid individuals who did not receive the flu vaccine.

– We’re especially thankful to our family and friends who got the flu shot (even though they preferred not to) so they can continue spending time with us.

•  Wash fresh fruits and vegetables thoroughly and/or peel skin before eating.
•  Be sure that all ground meat, chicken, fish and pork are thoroughly cooked before eating.
•  Never eat sushi.

– Actually, we have an entire paper filled with foods from all food groups that Jody is to avoid, such as common cheeses, salmon, crab, sliced deli meats, store bought salads, well-water, brewed tea, raw honey, and the list goes on and on.

•  Cook eggs until the yoke is solid before eating.
•  Do not eat raw cookie dough or “lick the bowl” when preparing cakes.
•  Use only plastic, dish washable cutting boards.
•  Do not eat at buffets.

– This is due to the risk of bacteria growing on food that has been sitting out for too long, possibly kept at improper temperatures, as well as the risk of infection from people touching the handles of the serving spoons.

•  Avoid large crowds, especially in close quarters indoors (movies, concerts, plays, religious services). If this is not possible, wear a mask, and wash your hands frequently.

– We are church-going people so this one is challenging for us. We did stay home during most of the cold/flu season this year, especially with Jody being so freshly transplanted. My concern is actually less about Jody (he can wear a mask and wash his hands), and more about our young daughters picking up something in the over-crowded classrooms, and bringing it home. In fact, our first Sunday back with the girls that is exactly what happened, much to my dismay. I’d like to add that if I’m sitting beside you at church and you see my sanitize my hands immediately after shaking your hands, don’t take it personal, it’s not that I think you might be germy (or maybe I do), I’m just trying to keep my family healthy.

•  Be aware of people around you – If someone seated near you is coughing or sneezing – get up quietly and MOVE! These precautions are especially important during flu season (October thru March).

– Sometimes I think I’m a little too aware of the people around me. I can pick up on someone coughing from across a room. I cringe when I see people coughing into their hands or blowing their nose and not washing their hands or using hand sanitizer afterwards. I can envision their germs spreading onto everything they touch afterwards.

•  You should never participate in gardening or digging in the dirt (fungus and mold live in the soil and grass).

– This is a hard one for Jody since he enjoys working in the yard and even went to vo-tech for landscaping. I, on the other hand, don’t enjoy yard work. So if you drive past our house and see lots of weeds growing, you’ll know why.

•  NEVER empty kitty litter or clean the cat litter box.
•  Avoid kittens at all times. Adult cats may present a lower risk of giving you an infection but can also be a problem.

– Good thing we’re not cat people.

•  Avoid all birds and their droppings.
•  No traveling/flying in an airplane for at least one year following transplant.
•  When flying in an airplane you must wear a mask and keep the air vent closed.
•  When outside in the sun, wear protective clothing, broad brimmed hat, sunglasses, sunscreen and lip balm. The best times to be outside are early morning and late afternoon. Transplant meds make the skin more sensitive to the suns rays, resulting in high risk for skin and lip cancers. You must see a dermatologist yearly to watch for changes in your skin.
•  Anti-rejection medications are time sensitive and must be taken twice a day (every 12 hours) FOR LIFE!
•  Every day (twice a day) you must monitor and record your weight, blood pressure, heart rate, temperature, home lung function, and blood glucose levels. Bring these with you to all clinic visits for review.

– I created a spreadsheet for Jody to record this information (I didn’t like the one that was provided to us by the clinic). If you are post-lung transplant feel free to download this document for your personal use if you find it helpful.  Lung Transplant Log

By now you’re probably getting a picture of how intense the rules are following a lung transplant. These things apply to Jody for the rest of his life and believe it or not, the above list is not all-inclusive, we continue to learn of new things that we need to watch out for or avoid altogether. I could probably write another blog post on how we actually put all of this into practice and what we do to keep Jody healthy, especially with young children in the home.  I will say that Jody always carries a mask with him and we have hand sanitizer nearby at all times. Obviously we do not enjoy being so diligent about avoiding infections and I often day dream about what it would be like to not be so consumed with avoiding and fighting germs. To not worry every time we go to someone’s house that the hand towel in their bathroom is one their entire family (including children) have been rubbing their hands and mouths on for a week. To not freak out internally when my kids are playing with another child who is coughing. I can hardly imagine what it would be like to have a cold and not worry about it putting a member of my family in the hospital. I remember when Jody’s CF doctors were beginning to talk about transplant (because he kept getting sick and dropping his lung function), I told one of them, “I think this entire thing is going to make me a germ-a-phobe.” His response was, “That’s okay!”

I imagine there are people around us who might not understand and think us extreme. Perhaps they’re tired of hearing us say that we can’t do something because of Jody’s transplant. Those people have probably never lived in a hospital or were faced with the real possibility of losing the love of their life. Once you’ve faced that, you never want to experience it again. I don’t ever want to see Jody, oxygen saturation dropping into the 50’s, gasping for air, barely able to move, out of his mind with hallucinations, and/or on a ventilator. The truth of the matter is that while I daydream of being “normal” I’m happy to be my germ-crazed self because it means that I have a reason to be this way. If Jody was not living, I could be “normal” and much less fearful of even the common cold, but he is worth every germ-fighting, infection-preventing routine we practice (and even the few gray hairs that I’ve acquired along the way).

* I apologize to all the email subscribers who I confused by accidentally (and prematurely) hitting the “publish” button while writing this post.  Oops!

Infection… but no rejection

26 Mar

Pre-bronch selfie

Since I last wrote, Jody had his six-month post-transplant bronchoscopy.  In case you forget, this is a procedure where he is put to sleep so they can introduce a scope, via his mouth/throat, into the lungs.  His lungs are examined and “washed” with saline.  Tissue samples are taken to check for rejection.  It normally takes about two days until we get the results of this test back.

Like his three-month bronch, this one showed no rejection!  Praise the Lord for that!  It did however show that he is growing a bacteria called Pseudomonas Aeruginosa.  This came as a surprise (to us)… sort of.

Pseudomonas is a bacteria that Jody harbored in his old, CF lungs.  Once he got it, it never went away.  That’s sort of the thing about Cystic Fibrosis.  They have thick, sticky mucous in their lungs and once bacteria gets in there it finds a home in the mucous and is hard, sometimes impossible, to eradicate completely.  This bacteria is typically controlled with inhaled and oral antibiotics, however, when it flairs up (becomes more numerous), one experiences symptoms and is said to have a lung infection, or a CF exacerbation.  Normally this calls for IV antibiotics to again lower the number of bacteria.  Those of you who have been following Jody’s journey before transplant know that he has spent his fair share of time in and out of the hospital fighting these frequent lung infections.  In the past it became clear when Jody had an infection because breathing became a little more labored (as his lung function decreased), cough and mucous production increased, and Jody became much more tired.  Those were his classic signs that it was time for another hospitalization and IV antibiotics.

We had been warned that it’s not uncommon for some of those old CF bacterias to make their way into the new lungs.  It could have been sitting in his trachea (or elsewhere) when the new lungs were placed, and eventually made its way down into the lungs.  Actually, we found out that a very small amount of this bacteria showed up on his three-month bronch (which they didn’t tell us at the time), but that it was too small to treat.  Now, three months later, it’s grown to a quantity worth treating.  We were surprised to hear of this infection because Jody feels great; breathing is good, he has no cough, no mucous, and no drop in energy.  He has none of the “classic” signs of an infection that we’ve grown so familiar with identifying.  I guess that’s the beauty of new lungs.

In case you’re wondering, this does not mean Jody’s CF has returned.  Thankfully, this cannot happen.  Jody will never again have Cystic Fibrosis in his lungs.  This means that he no longer has that thick, sticky mucous which bacteria love so much.  He should be able to get rid of the infection completely (yeah!).  He is treating with oral and inhaled (nebulized) antibiotics for three weeks; no IV’s, no hospitalization!


Post-anesthesia and breathing well

Here is a picture of Jody after the bronchoscopy, still a little drowsy from the anesthesia.  I share this photo because even though he’s in and out of sleep, you can see on the monitor, if you click on the photo (middle number in blue) that his oxygen saturation is at 99% on room air (no oxygen).  Seeing that never gets old!

Aside from the infection, the latest issue we are dealing with is the possibility of Jody haven broken the internal wire holding his sternum (chest) together.  Over the last week or two he’s been noticing pain in the center of his chest, that feels shallow, like somethings rubbing.  In certain positions he moves he can hear a “popping” sound.  These signs point to a fractured internal wire.  Next week we have an appointment for a CT scan of his chest which will tell us if our speculation is correct.

Like us, your next question might be, how will they fix that?  Honestly, we’re not really sure.  When Jody asked his transplant coordinator this question, her response was, “I don’t want to tell you because I don’t want to give you anxiety.”  This response produces almost more anxiety because it sounds like the fix for broken wires is pretty ugly.  Of course, I imagine the worst; having his transplant incision opened to remove or replace the wires, needing chest tubes, needing the thoracic epidural again, pain issues, etc..  Most likely it won’t be that bad,  but it would have been nice for the coordinator to give us a better answer.  Who knows, maybe the wires are perfectly intact and there’s another reason for the pain.  As always, I’ll keep you updated as we learn more.  We appreciate your prayers about the infection and the possible broken wires.

Six Months Later

15 Mar

Today is March 15th.  Six-months ago today Jody underwent one of the riskiest, most challenging surgeries that can be performed.  His life was placed into the hands of a talented surgeon, a team of knowledgeable anesthesiologists and a room of OR staff.  He was ultimately protected by The Great Physician himself.  A half-a year, 26 weeks, or 182.5 days ago, Jody was quite literally given the gift of life; he received a double-lung transplant!

The road since transplant has not been without its challenges but things are looking up.  Miraculously, Jody has avoided all the nasty stuff going around this winter and has not seen the inside of a hospital room since the day he was discharged from his transplant stay (October 21st).  Actually, this is the longest span of time that he has gone without being admitted to the hospital in over a year, maybe even two.  We’re so accustomed to him being in the hospital every two or three months (sometimes even more often) that it seems odd to have gone six months without it.  Could it be that he might go an entire year without being in the hospital?!?!

As healing continues, Jody has been enjoying the life of the rest of us, one where breathing comes naturally.  He can climb the steps to our second floor without needing to sit down and catch his breath at the top.  He can laugh freely without it turning into a 10 minute intense coughing fit.  He can spin and dance with our daughters without huffing and puffing and getting tangled in oxygen tubing.  These are simple things but in life they make up the big things.  These are the things we learn to really appreciate when they don’t come so naturally anymore.

Here are a few more simple big things that Jody has enjoyed over the last few months:

His birthday


The ability to inflate a balloon using his new, properly functioning, air-filled lungs.


A daddy-daughter date

Painting Date with Daddy

Having his central line removed after five months, which means he is finally free of all lines and tubes on his body.


Getting back in his wood shop and building us a custom window seat with lift tops for storage.

(How wonderful it was to hear the sound of his power tools and to smell the old familiar scent of fresh-cut wood).


Getting to use our snow-blower. Cold air and failing lungs do not get along so Jody has not been able to use this ‘toy’ for the past few years. His exact words after doing this were, “It’s such a thrill to be out there, doing stuff, and not hacking (coughing) away!”


Six months ago Jody was sick.  On the outside he looked healthy, but on the inside he was struggling to do something so innate, so natural… breathe.  There’s no telling how long Jody would have lived had it not been for the selfless gift of a heartbroken family.  To them we will be forever indebted.

This was Jody six-months ago, life forever changed…


This is Jody today… double-lung transplant survivor, living, breathing, and enjoying life!


Because you asked for it…

28 Jan

Today is the day Jody has been dreaming of for the last four months!  Why, you ask?  I’ll tell you… if you keep reading.  Many of you have noticed that I’ve taken a break from blogging and I’ve been increasingly questioned about this.  I’m touched that so many of you enjoy reading my posts and take interest in knowing how Jody is progressing in his transplant journey.  In this post I’ll do my best to give you an update on how things are going, but I warn you, it’s likely to be a long one.

Since transplant Jody has needed a daily intravenous (IV) infusion of a powerful anti-viral medication (Ganciclovir).  In the hospital this drug had special connectors on it to prevent the nurses from touching the medication.  At home the drug came packaged in about three layers of bags, we were given gloves to wear when handling it, and gowns to wear (I guess) when administering it, as well as a special box to dispose of it.  Jody needed to take this drug because he tested negative for CMV (Cytomegalovirus), and his donor tested positive.  We had been warned pre-transplant that this is a common occurrence as many of us have been infected, unknowingly, with the CM virus.  To help you better understand, here’s a brief explanation of the virus from the Mayo Clinic:

“Cytomegalovirus (CMV) is a common virus that can infect almost anyone. Most people don’t know they have CMV because it rarely causes symptoms. However, if you’re pregnant or have a weakened immune system, CMV is cause for concern.

Once infected with CMV, your body retains the virus for life. However, CMV usually remains dormant if you’re healthy.”

Anti-viral medication, handled like a chemo drug.

Anti-viral medication, handled like a chemo drug.

It amazes me that so many CFer’s test negative for this virus because it seems they so easily catch everything else. Regardless, because Jody was so immunocompromised fresh out of transplant and his team did not want him to get the CM virus, he had to take this IV infusion for three months, stopping mid-December.  At that point he converted to a pill form which won’t necessarily prevent him from getting it like the IV did.  It is likely that he will contract this virus at some point in time, as most people do, so he is tested routinely for the virus so it can be caught and treated early if and when he does get it.  Jody is no longer on IV’s but he does still have his Hickman catheter in his chest which he flushes daily to maintain patency.

Christmas '14In December our family enjoyed a simple and quiet Christmas at home, just the four of us.  One thing that was missing this year was a 30 foot oxygen line, getting stepped on and yanked beneath the presents and wrapping paper. It’s absence was welcomed.

Hello 2015!In January we celebrated the arrival of the new year with hope that it will be one of healing and change; healing from the last three years of our lives and change as our lives become (ideally) a little less dictated by disease and sickness.  For two years, and especially this past year, we have felt held back and it’s great to feel those reins being loosened.

Jody is now four months post double-lung transplant and since my last post he has continued to improve.  He is still participating in pulmonary rehab three days a week, and his lung function is still climbing.  It’s incredible, and crazy and wonderful!  I wouldn’t doubt Jody will soon hit 100% lung function!  His breathing has never been better!

Jody’s anti-rejection medications come with many side effects and we are still working to manage them.  His blood pressure, which had been high for months following transplant, and was unchanged by an anti-hypertensive drug, is now much lower after the addition of a second blood pressure medication.  The steroid he is on is being tapered down toward the maintain dose he will take for life.  Each time his dose is lowered his blood sugar levels improve.  It is possible that he will be one of those few people who will not be (medication induced) diabetic for life.  We hope that once he reaches his maintenance dose of Prednisone he will be able to stop checking his blood sugar and injecting himself with insulin.  How great would that be?!

Jody seems to be very sensitive to his Tacrolimus, one of the anti-rejection drugs.  His desired blood Tarco level is between 12-14.  This is the range where the drug is most therapeutic for him.  His levels seem to be jumping all over the place, going low at 11 or high at 16.  His dose keeps changing and we have yet to find the perfect fit that keeps him steadily in his desired range.  It’s odd that even on the same dose his numbers fluctuate so much.  This drug is hard on the kidneys and Jody’s kidney function is definitely showing signs of impact from it (and other) medication, especially when his Tacro levels are elevated.  This is a little worrisome to me, a once nephrology nurse, especially knowing that it’s not uncommon for lung transplant patients to eventually need a kidney transplant as well.  Jody’s kidneys have taken a beating through years of potent antibiotics, toxic levels of drugs, and other necessary medications, known to be taxing on these hard-working organs.  Obviously we pray healing and protection over Jody’s kidneys.

Guys Cabin Weekend '15Overall things are going really well.  Jody is breathing independently and enjoying life… cautiously… after all, it is still cold & flu season.  This month he even got to enjoy a fun ‘guys’ weekend away with some friends, something that would have been near impossible a few short months ago.  His new lungs are AWESOME and we remember with gratitude, the person/family who gave them to him.

As I mentioned in the beginning, today is the day Jody has talked about for the past four months.  Today is the day he got his feeding tube taken out!!!  He has hated that thing since the day it went in.  It was put in out of necessity, he hadn’t been allowed to eat for over a week.  Actually, he probably only ate a week and a half out of the five weeks he was in the hospital.  I’m glad for the nutrition this tube provided him during that time, but since coming home, and being given the okay to eat, the tube hasn’t been used (with the exception of daily flushing to clear the tube).  At discharge Jody weighed 100 lbs, today he is 124.  Thank you to the many of you who brought us delicious meals, you played a part in this much needed weight gain.

You might be wondering why Jody’s feeding tube has stayed in this long if it hasn’t been used for the last three months.  Steroids impair healing and because Jody was on such a high dose, his feeding tube hole might not have closed had they taken it out three months ago.  Picture him taking a drink and it immediately coming out his stomach (we’ve seen videos of this).  Each month the doctors have lowered his steroid dose and he is finally at a level where they feel his tube can be pulled without complications.  This is great news because the tube has caused Jody great discomfort.  It is now gone, leaving Jody with yet another scar, proof of all he’s endured on this journey.

Jody’s has now been approved for monthly clinic visits.  It’s so great to be spending less time at Hopkins.  Sometimes he still has appointments there for other reasons, like today, but it’s great to have his transplant appointments less frequently.  For the past year (or more) we’ve been going to Hopkins at least monthly, often even more frequently then that, so I can hardly imagine what it will be like when Jody’s appointments become even more spaced out.  To put Cystic Fibrosis and transplant on the back burner of our lives again seems dreamy.

I warned you this might be a long post.  I’ll end by asking for your continued prayers for protection over Jody during this tough cold and flu season.  Ironically the girls and I have gotten colds (we have them now) but we’ve managed to keep them from Jody (so far).  Our family has avoided the stomach bug and flu that has been spreading like wildfire.  We’ve been warned about how any of these might impact Jody, and would prefer to avoid them (and another hospitalization) altogether.

Thanks again for reading and for your continued care and concern for Jody.  On Saturday he will be celebrating his 43rd birthday… out of the hospital, breathing great and healthy.  One couldn’t ask for much more than that!


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