Here is the continuation of the post I wrote last night. Jody’s morning blood work revealed that his WBC’s dropped slightly, down to 25 from 28. It’s a small drop, but it’s not an increase so we were thankful for that. All of the cultures done to check for infection continued to come back negative, leaving the doctors wondering what happened to make this sudden change in Jody’s status. One doctor even mentioned that they almost hoped his bronchoscopy would show lots and lots of mucous in his lungs so they could pin point it to that, clean him out and watch him get better. Unfortunately that wasn’t the case.
Overnight last night Jody slept wearing 1L of oxygen and his O2 sats ranged for the most part between 87-89%. This morning we noticed early on that his shortness of breath seemed increased. It felt (and still does) like cruel and unusual punishment to simply let him struggle to breathe. We attempted two short walks today, and each time his O2 dropped to 72% at its lowest. During that time they did increase his oxygen to 2L, but were quick to turn it back down to 1L as soon as his level returned to 80%. I’ve seen Jody short of breath more times than I can count over this past year, but today has to be one of the worst times. I desperately wanted to crank up the O2 and let him breathe comfortably. I don’t understand why oxygen is so “toxic” to his lungs, as Dr. Shah puts it. I did ask this question to the NP today and she said it has to do with the free radicals in the oxygen and that it can negatively affect the sites of anastomosis in his lungs (that’s too much science for me). I completely trust that he knows what he’s doing, it’s just hard to be on this end, to watch someone you love struggle with something that should be natural and is so necessary to function in life. Even moving from lying down to sitting on the edge of the bed elicits shortness of breath like I’ve never seen. Sitting across the room from him I can hear the crackling in his lungs as he breathes. I hate watching, hearing, and listening to him gasp for air. I know he doesn’t enjoy this much either.
I don’t claim to know how to read a chest x-ray (it’s just not something that I need to know in OB nursing), but I can see the changes in his lungs compared to a week ago. Initially there was one white patchy area in his left lower lobe that the docs have been keeping an eye on since surgery. Now, it looks like both of his lungs are filled with white patches. It’s still hard for us to wrap our brains around how much damage was done by whatever it is that caused this, and how fast it happened.
Last night I told you Jody was supposed to have his repeat swallowing study today. When the time came, he just wasn’t feeling up for it, and told them he wanted to wait for another time. The doctors agreed but did change him back to NPO (nothing by mouth, no food or drink) in the event that silent aspiration is the root of this problem. Until Jody is feeling ready to repeat this test they put him back on tube feedings for his nutrition and medications. In the meantime, when he’s not eating or drinking, if his lungs start to improve, it could be confirmation of aspiration.
Late this afternoon brought some good news. The pulmonary fellow returned to the room and excitedly announced that they found bacteria in one of Jody’s sputum samples from Tuesday. I’ve never been more excited for the presence of bacteria! She told us that both her and her attending threw their arms up in the air and happily exclaimed, “Yes!!” when they saw the results. In case you’re wondering why the celebration over bacteria, which normally is a bad thing, it’s because it gives us an answer. It’s not the complete answer to the change in Jody’s condition, but it’s a start. An answer is better than no answer. The exact bacteria has not been identified yet, but it will be soon, and that will help greatly with knowing how to treat and eliminate it. Currently Jody is on ten different (mostly IV) antibiotics. Many of these he has been on since surgery, others have been added since his decline to ensure he is covered for a wide range of bacteria. With the bacteria identified they will be able to tailor his meds to knock it out.
I also want to mention that Jody’s blood work has shown an increased tacrolimus level in his blood. This is one of the immunosuppressants he is taking. The normal range is 10-12 and he was 24 yesterday and 22 today. He is having a lot of numbness in his legs and feet as well as frequent twitching in his arms and legs, especially when sleeping. We’ve also noticed he’s been talking a lot in his sleep, which is unusual for him. This level being so high makes him more immunosuppressed, at risk for infection, than he should be. More concerning is the impact of this on his kidneys. Between the big gun antibiotics he’s on, the dye from the CT scan yesterday, and the increased Tacro level, and the many other meds he’s getting, his kidneys are sure to take a hit. His creatinine (a measure of kidney function) has already jumped and they expect it will get worse before it gets better. Unfortunately, this is a necessary thing. For the protection of his lungs he needs to be on these medications. It’s also important for his lungs to stay dry so they can’t flush him with fluid which would benefit his kidneys. It is our hope and prayer that any damage done to his kidneys will not be permanent.
Whatever happened to Jody’s new lungs is going to take time to fix. The story is far from over. It is discouraging but we are trying to be patient and stay positive. I keep telling myself that one year from now Jody will be doing great and this will be nothing more than a distant memory. This is a means to an end, one that I’m believing will be awesome. Please continue to keep us in your prayers until that time comes.
To be continued…
CF Wife 
Praying. Hang in there.
Uncle Doug and Aunt Vicky send their love and will continue to pray for both of you and for answers.
You are not alone. You are thought of and prayed for often throughout the day and night. Praying for good news tomorrow and peaceful, healing sleep tonight.
Our prayers remain with you. We all know that Jody is a fighter but I believe it is his time to rest & heal & let God do the fighting for him. This is definitely one of those “Be still & know that I am God” moments. Praying they will identify the bacteria & find the antibiotic to kick it out of his system. Praying no permanent damage will be done to his kidneys. Praying continued strength to you both & safety in your travels Tiffany. It was so good to hear Jody’s voice the other day. It made me extremely emotional. I want to keep hearing it for a very long time. Our love to you both.
Prayers and hugs are what I have to give. You are in our thoughts so frequently. You Are loved!
Tiffany,
I just got done reading your most recent post. It is imperative that you have the doctors continue investigating the high Tacro levels. Kurt was on this anti-rejection drug for a long time. He displayed the exact symptoms….twitching, jerking and talking strangely, especially when falling asleep. Kurt’s Tacro level was to be a 6 and it was a 24. This is a toxicity that needs addressed!!!! I know that people are to reply on here with encouragement and positivity, but this is serious and needs to be handled right away!!!! WE went through this and know what’s happening. If you need to know more about this, please get in touch with me! 7173432016!!
They will be able to change him anti rejection drug….Kurt is now on CellCept. Also, that does not need to be monitored the way the Tacro does. It is a much better drug without the side effects!
Please know that we are praying for you all!! I’m so sorry to be a killjoy in this post, but I didn’t know any other way to be in touch with you!! And I apologize to anyone else reading this post. You are probably thinking I’m nasty, but I’ve been through all of this!!!
I’m sorry,
Julie Frey Holtzer
Hi Julie. Jody is on both Tacro and Cellcept. The high Tacro level has to do with his absorption issues which result from his Cystic Fibrosis. They switched him from sublingual to PO and didn’t expect him to absorb so much of it because of his CF but he did. The team is very aware of the issue and are monitoring him closely. He has been off of the drug for a few days waiting for the level to go down to safe one. Thank you for your concern.
Julie, You were definitely NOT nasty. I am sure that Tiff appreciates your advice, especially since you and Kurt are going through the same thing. I think it is wonderful that she and Jody have support of friends like you.
Marian
Thanks Marian. I was concerned. Since we’ve been through this with a different type of transplant, it just upset me to see someone else going through it. But my husband had a life threatening seizure from the toxic tacro!! Thankfully he’s okay now, but he is still on anti seizure drugs as well.
Dear Tiffany and Jody;
I look forward to your posts and updates. Much love and prayers to you.
I heard that Francesca Batistelli song “Angel in your arms” and started to cry, thinking of your journey with Jody’s new lungs. I know all the support of friends, family and our God, who is Bigger than we can ever imagine, are covering you with wings of healing, comfort and love.
I am surprised that with all the antibiotics that Jody is on, that one, any bacteria can even grow anywhere, and two, that a culture would even come up positive for anything even if bacteria had grown. I say this because, you know at WBH, if we have a patient that has a fever, and the doctor orders antibiotics, he/she always writes not to start the antibiotics until after the cultures are drawn so that the culture results will show the true picture of what is happening to the patient? I am surprised that the doctors can even get a true culture result, especially if Jody is on so any wide-spectrum antibiotics.
I can’t believe how much you two have to deal with on a daily basis. I pray for you two, and your families everyday, and for the family who so unselfishly donated this gift of life to Jody. Looking forward to your next post.
Love you, Marian
I Must Strongly agree with my wife Julie. The pain and darkness that I went through during that toxic reaction to the Tacro is not a fun ride. They had to intubate me twice because of the Tacro. Please please please be certain that they are monitoring this closley!
I continue to keep Jody, you, his caregivers, and everyone on the front line of this fight in my prayers. Your family is so loved. Be sure to tell Jody that when Rick announced that Jody got his lungs at the 11:00 o’clock service the week after his transplant, there was such a heartwarming, ‘loud’, spontaneous applause from the congregation! True rejoicing. And Tiffany, you are so vigilant in your love, care, and attention to Jody as he continues to fight.
I pray for God’s peace to cover you, and that He gives you strength above what you need.
I love you two!!!
Hang in there, you both know that your doctors and nurses are doing the best they can. You are holding up as well as possible, and I surely understand all the issues you are dealing with. I pray that you continue to have patience that slowly but surely Jody with improve. It is a very bumpy road to take, each case very individual, and hopefully as you wrote – a year from now it will be a faint memory. I pray for the doctors to make good decisions for Jody, and I pray for your families at home too. Love always, Marilyn
I am continuing to cover you both in prayer. You do such a fabulous job at writing and sharing your journey. Thank you for letting us walk with you guys in your most intimate times of highs and lows. (((Hugs)))