Not the best news, but not the worst.
I just got a call from our transplant coordinator with the results of Anthony's biopsy. He is at 1R for cellular rejection, his normal baseline which requires no treatment. This news is good. His AMR (antibody-mediated rejection) is still at a 2, the same as it was when he had his previous biopsy at the end of January. This news is not good, but not wholly bad. The pathologist who read the stain says it is better than it was which means A...nthony's recovery is trending in the right direction. It just may take more time and/or more treatment.
Because Anthony is clinically better than he was--improved echo, labs, etc., the team will not do anything immediately. But tomorrow the whole team will meet to decide on a plan. I have no idea what they will decide, but until then, we have been cleared to return home from the RMHD and enjoy time with Ray and with Samantha and Abby while they are home for spring break.
This news certainly wasn't what we had hoped to hear, but it is better than it could have been. At least we know the treatments have helped to some degree. But we long for a full recovery.
Please pray for protection over Anthony's heart, that it will suffer no more damage, and for his team as they make crucial decisions about his care.
God is able.
Sorry for the delay in updating. It has been a busy and tiring day. Thank you for your thoughts and prayers.
Anthony tolerated the procedure well....
His heart function is normal.
His coronary arteries look great. (A big relief as rejection can sometimes cause problems to develop.)
His echo looked good.
His labs were better, particularly his BNP which is a measure of heart failure. (During active rejection his BNP was in the thousands. A week and a half ago it was in the 800s. Today it was in the 600s.)
An unexpected visit with Anthony's camp friend Jacob and his mom. Jacob is back from his hospital stay in Philadelphia and was in clinic today. Wonderful timing!
The "not so good":
The cath was long. It took the doctor four tries to get a catheter in to check his coronaries. A new and unexpected difficulty.
His heart pressures were high. Very high. His wedge pressure was in the upper twenties; just over a month ago it was only 12. A frightening change. But his pressures were also erratic, leading the team to wonder whether it may have been an effect of sedation and/or his respirations during the cath. A legitimate possibility since all the other info they gathered was so positive. And if that wedge pressure were "real", Anthony likely would be obviously symptomatic--experiencing breathlessness, fatigue, etc.--which he is not. So in the absence of symptoms plus the good results from today, the team is not overly concerned, at least not at the moment. Unfortunately, it still weighs a bit heavy on this mama's mind.
His labs show he is still very immunosuppressed and therefore still very vulnerable to infection. We have been vigilant about keeping him safe from germs and were hoping it wouldn't be too much longer before we could ease the restrictions. But it is still just as crucial now to protect him as it was when he first left the hospital last month.
Overall we are very thankful for the results we received today, but the most important information will not be available until tomorrow. The biopsy results run the show. I would like to say we all are confident in a good result, but after the surprises of the past few months, no one is making any predictions.
So we wait.
And continue to hope.
After a relatively quiet couple of weeks, we now ask for your prayers again. This morning Anthony will have his annual cath. He will have both a biopsy (via the neck) and a coronary artery check (via the groin).
Please pray for his safety during the procedure, skill and wisdom for his providers, and good results--no rejection, good heart pressures, and healthy coronary arteries.
The sting of the past few months lingers and sometimes leads to doubt and fear, but we can see wit...h our own eyes that Anthony is better than he was. Our hope and prayer is that the results today show the same.
Thank you for praying with us!
On Friday, Anthony had his first follow-up appointments since his discharge last week.
After multiple visits over the last few months with bad news upon bad news, finally we left clinic -- both Cardiology and Pulmonology -- with some good news!
Anthony and I made it home last night!
Not without a little delay, however.
After a flat tire, the kindness of one of our favorite nurses, the helpfulness of a CMC security guard, and a Discount Tire conveniently located within just a few minutes from the hospital, we made it home about two and a half hours later than expected. A frustrating delay, but I am thankful we found the problem before we got on the highway....
We are both pretty exhausted, but happy and relieved to be home. And Ray is happy to have us home again, too. We will have about five days here before we head out again for a clinic appointment at the end of the week. Anthony likely will be seen more frequently over the next few weeks. I don't mind; keeping him healthy is the priority, no matter what it takes.
For the next thirty days or so he will continue to be susceptible to infection which means we will need to be a bit more cautious. He will have to wear a mask in areas with large groups of people and should avoid being around anyone, including family, who is ill. Since his immune system has been suppressed to a similar degree as he was right after transplant and since it is flu season, we must be vigilant about protecting him.
Looking ahead, our goals are to continue ridding him of the extra fluid he is carrying and to allow his heart to recover. Much like after a heart attack, he is taking a medication to help his heart relax and another to "remodel" it by healing the damage and scars caused by the rejection. Exercise and training are also part of recovery. We are to start small--only three 30-minute walks this week--and see how he responds. Gradually his time and frequency of exercise will increase.
Aside from labs and clinic visits, Anthony will also have a cath and a metabolic stress test in the next few weeks.
But that's for later.
For now, home.
Five rounds of plasmapheresis. Check.
Three Thymoglobulin infusions. Check.
One IVIg infusion. Check....
One echo. Check.
One chest CT. Check.
One central line removal. Check.
Three doses of Velcade. One remaining.
After the last IV dose of Velcade is administered tomorrow morning, Anthony will come to the end of his treatment for rejection. Now that his condition earns the name "persistent rejection" after his two previous bouts of rejection in December, we come to the end of it excited and relieved, but cautious. We hope the treatments worked, but until we have evidence from a biopsy, no one can be sure.
What we do know is that Anthony continues to look good and feel well. His echo yesterday showed only the smallest bit of improvement, but improvement nonetheless. His pulmonary edema is still a lingering issue, but the CT scan from tonight showed no significant pulmonary problems. His heart rate is still elevated, but the beta blocker they started last night is already lowering it. We have to hope that all of these things are positive signs of progress.
But recovery will take time. Weeks, possibly months.
When I let myself think about how healthy Anthony's heart has been over the last four years and compare it to where he is now--with heart failure medicines, fluid restrictions, and extreme immunosuppression--it is, frankly, devastating. But we knew long before they ever wheeled him into the OR for his transplant surgery that rejection can happen at any time, no matter how far out from transplant you are.
So we have no choice but to accept it and adjust to yet another new normal. New medicines, new restrictions, new goals.
Anything for Anthony.
Yesterday was scheduled to be another "off" day for Anthony, but after noticing a corner coming up on his central line dressing, the nurses decided to give him a full dressing change a little earlier than planned. Because of the location and size of the ports, it took two tries to get it covered properly. We are grateful to the C-8 nurses who took the time to get it right, and for their care for Anthony throughout as dressing changes can be quite stressful for him. Hopefully ...the next time they need to attend to the dressing will be when they pull the line in preparation for discharge.
Today has been busier. Anthony just finished his 4th round of plasmapheresis, and afterwards he will have his final Thymo infusion. He is in for a long day of relative confinement. Please pray for patience and no complications.
Because he is extremely immunosuppressed right now, the transplant team consulted with Infectious Disease regarding steps they can take to protect Anthony from infection. This morning they started him on two new daily meds--azithromycin and Valcyte--and the team will continue to assess whether more prophylaxis is needed. And as of yesterday Anthony is now on reverse isolation, meaning anyone who enters his room must wear a gown, gloves, and a mask. This is for his protection from all the potential germs caregivers and/or visitors might bring with them. He is still able to leave the room for walks, but only with a mask. Please pray he is spared from infection. He has enough to fight already.
The team is also working to manage his pulmonary edema more effectively. He is already on some diuretics to help with it, but they now are putting him on some mild fluid restrictions. I am happy about this. I am anxious for him to find some relief.
Our original discharge date was to be Saturday, but it looks like Sunday is the new goal. They added another IVIg infusion to Friday's schedule and will start him on a beta blocker to help lower his heart rate. They want him to stay until Sunday to monitor him through these changes. Although we are more than ready to be home, we don't want to leave before he is ready.
Thankfully Anthony still looks and feels well despite his lingering issues. We've been walking around the floor daily, playing Nerf basketball in the room, making up "You know you've been in the hospital too long..." jokes, and laughing a lot. I am continually amazed at his ability to maintain a good attitude in the midst of all that is going on.
Thank you for keeping him in your prayers. Please continue!
The last couple of days have been busy. Since I last posted, Anthony has had plasmapheresis #2, another Thymoglobulin infusion, two relocations (one to the IMU and then to the cardiac floor), an overnight visit from Ray, Samantha, and Abby, and then a day visit from my sister and brother-in-law, Diane and Dave. All of this activity certainly made the time pass more quickly, and the visits boosted our spirits. Laughter is so good for the soul!
Medically speaking, there have be...
Today has been an "off" day. There were no treatments nor procedures. So aside from the round-the-clock monitoring of vitals and his regular daily med regimen, we have enjoyed a little respite from the medical busyness of the past few days.
And we received some encouraging news. Anthony came in this week with an audible "gallop" in his heart, but as of this morning it can no longer be heard. So something is working! Whether it is due to his rejection treatments, the effects o...f diuretics, or both, we are thankful it is gone. Positive progress.
Tomorrow will bring his second round of plasmapheresis which will be a little longer than his first. If he tolerates it well, he may be able to move out of ICU to the cardiac floor to finish the three remaining rounds. As always, he has had great care in the CVICU, but it will be nice to have a private bathroom and a little more freedom.
After plasmapheresis tomorrow, he will receive another round of Thymoglobulin. This drug is the same one which triggered fever, headache, and elevated heart rates Tuesday night. With two long treatments, it will be a tiring day; please pray that Anthony tolerates the Thymo more easily this time so he can have a restful night's sleep afterwards.
Looking ahead, Anthony's discharge date will ultimately depend on how he is doing, but the target date of discharge is Saturday, February 11th. His plasmapheresis cycle will finish before then, but the other IV med he started yesterday, Velcade, which targets his antibody-carrying plasma cells, requires a total of four rounds and can only be given every four days, extending our stay two days beyond what we originally thought.
We know we are in for a long haul since close monitoring and testing will be required even after we return home. Please pray for our spirits as a single day can sometimes feel like a roller coaster ride. Every piece of good news brings great joy and relief, but even the smallest bit of bad news can easily cause us to spiral downward. Please pray we would keep our eyes on the big picture.
And on the only One who can give us perfect peace.
We have a plan.
Anthony had a difficult night, developing a fever, headache, nausea, and an elevated heart rate up into the 160s--all likely side effects of the Thymoglobulin infusion. Thankfully those symptoms have passed, leaving both of us with only one lingering side effect today which is true of nearly every hospital stay--sleep-deprivation. Hopefully tonight will be smoother since there are no treatments planned for this evening.
Although the results of the stain have n...ot yet come through, the team made the decision this morning to proceed with plasmapheresis and another med, called Velcade, to hit the antibody mediated rejection hard. After little effect from the previous treatments, they know they need to move swiftly and more aggressively to get the rejection under control before it does any more damage to his heart. We heartily agree with this plan.
In fact they already started the first round of plasmapheresis about an hour ago. Anthony will receive a total of five rounds over the next several days, with a one day pause between each. Each round should last between 2 and 3 hours.
Although the prospect was a little daunting and scary at first, he is tolerating it very well so far. In the attached picture you can see a bag of yellow liquid hanging behind the machine; this is the plasma they are removing which contains the offending antibodies. His technician explained the process well: "Anthony's body, specifically his heart, and his antibodies are in a fight. I am here to separate the two and break up the fight." I love this analogy!
The road ahead may not be easy, but we are so grateful there are solutions and such amazing technologies to help him. Thank you for keeping us all in your prayers. We are desperate to win this fight.
For the most part, the results are in. One more puzzle piece...a stain which won't be ready to examine until tomorrow...remains. But the team has enough information to take the next step.
The explanation Dr. Sutcliffe gave us this afternoon was a bit more detailed than I will share here, but here is the gist:
Anthony is still battling 2R (moderate) cellular rejection....
Anthony is also still battling some form of antibody mediated rejection. Tomorrow's stain result will confirm whether it is moderate or mild. The prediction is moderate.
Anthony's donor specific antibodies were stable and, in some cases, lower than they were a few weeks ago. (Our one bit of good news this afternoon.)
So despite the last month of treatments, we find ourselves in just about the same place as we started...fighting a moderate form of mixed rejection.
Frustrating and disheartening for all of us.
But thank God, there are other treatments to try.
As I write, Anthony is receiving a six-hour dose of Thymoglobulin through his central line which will help target both kinds of rejection, cellular and AMR. Then tomorrow, after the full transplant team has a chance to meet, it is likely they will begin plasmapheresis. Beyond that, I don't know.
It looks like we are in for a longer stay than we hoped or planned, but we know it is where we need to be. Anthony has an excellent team here at Children's who care for him not only as a patient, but also as a person.
Please be in prayer for the team as they make decisions, for Anthony's caregivers, for our separated family, and most importantly for Anthony. For courage, strength, endurance, and full healing.
Anthony and I both feel as if it should be the middle of the evening instead of mid-afternoon. It has been a long and eventful day so far.
The cath went well. They took him back around 7:30, and about an hour and a half later Dr. Nugent was out, updating me about what he found. Thankfully, Anthony's numbers were good, specifically his wedge pressure which had dropped from 16 measured a month ago down to 12, a good sign of progress.
Dr. Nugent saw nothing else which concerned ...him, but with the recent rejection episodes, the cath numbers offer only part of the picture. His biopsy results and antibody levels are running the show today. Those results should be available later today and will determine what happens next.
Although we all are encouraged about the cath numbers, the echo results from yesterday, Anthony's elevated heart rate, and his lingering pulmonary issues all indicate that something still needs to be addressed. It is possible these symptoms are simply related to recovery; bouncing back from rejection is not always swift, and he may just need more time to recover. Or it could be rejection still brewing.
Which is why they decided to place a central line in Anthony's neck this morning during the cath and why they moved him to the CVICU afterwards. Now, if his antibody levels come back high, they can begin plasmapheresis immediately, avoiding a second trip to the cath lab for a line placement. If plasmapheresis is warranted, he will remain in the CVICU for the next 5-7 days to complete the treatment. If not, they will pull the line tonight and go to plan B. Or plan C.
But we won't know what's next until all the results are back. So we wait. Weary, but still hopeful.
Thank you for continuing to pray.
After several days of his heart rate trending higher and his pulmonary issues continuing, Anthony was seen by his team in clinic this morning. We received news we had hoped not to hear. His echo results showed that his heart has worsened. In the doctor's words, "It is stiff and thick." Despite all the treatments.
In order to find the cause and how to treat it, they need more information. Anthony will have a cath in the morning, a week earlier than planned. The results of the ...biopsy and a DSA (donor specific antibodies) blood test will determine what happens next. Anything is possible...from oral meds to plasmapheresis to anything in between. They won't have a plan until they know what they're dealing with. Continuing rejection is highest on their list of concerns. And our own.
This news was crushing to our spirits. But we are choosing to hope. Anthony's lab results from today were normal, and his demeanor, appetite, and energy have all been good. Markedly better than a month ago. Even better than two months ago. We believe we have good reason to remain optimistic.
We will know more tomorrow.
Please, please pray.
Anthony's fourth and final Rituximab infusion is today. He will continue taking low dose steroids indefinitely, but the hardest parts of his rejection treatment are almost over. A repeat biopsy later will confirm whether or not it worked.
He looks and seems better than he did a month ago (I say "seems" because he insists he never felt bad) which gives us hope that the treatments have been successful. His heart rate is still higher than his normal and his lung...s are still not perfect, but so far the Lasix he started taking last week appears to be doing it's job, gradually ridding him of extra fluid accumulated over the past few weeks. Both of these issues may take some time to resolve, but so far neither is slowing him down.
We have much for which to be grateful. Thank you for keeping Anthony and our family in your prayers.