What a Nightmare

Hi Everyone,

This last week has been the worst week ever, I don't even know where to start.

As I mentioned in my last update Julia had been having fevers for more than 5 days. So on Wednesday they sent her for a CT scan to look for fungus (once again). They didn't see any fungus but what they did see was fluid around her heart and lungs. They ordered an echo to confirm the fluid around her heart. About 10 minutes after the echo was done our transplant doctor came to see us. As soon as I saw her I knew something was wrong. She told me that she was not happy with the echo and that she suspected that there may be some rejection going on. She started her on high dose steroids, put her back on her immunosuppression, and told us Julia would go for biopsy the next morning. Thursday morning Julia went into the OR for her heart biopsy, half way through the procedure the doctor came out to tell us that there was so much fluid that she felt they needed to put in a chest tube. They paged all our doctors and one by one they entered the OR. The surgeon came out and had us sign consent to put in a chest tube in order to drain all the fluid. So Julia came out of the OR after biopsy with this huge tube sticking out of her chest, and she still has it. Friday was a very long day as we anxiously awaited the biopsy results. Finally that night at 7:30pm the doctor called to tell us that the biopsy confirmed that Julia had rejection. She felt that she was already on the right treatment and we would wait and see what the echo showed. On Saturday Julia started having arrhythmia's so an emergency ECG and echo were done. The ECG confirmed that their were some arrhythmia's happening and the echo was unchanged. Because of this Julia was moved to the ICU for closer monitoring and started on a more powerful drug to stop the rejection. Julia remained in the ICU until last night. She has had no more arrhythmia's and yesterday's echo showed huge improvement. Doctors feel that the rejection is under control and she is out of danger at this point.

Yesterday afternoon I had a meeting with our Heart Transplant doctor and our Oncologist. Basically most of the questions I had could not be answered. Doctors do not know why Julia has experienced rejection while on chemo, they have never had a patient have rejection while receiving chemo. It makes no sense, and there are no good answers, all it proves is that Julia will need to stay on her immunosuppression drugs while receiving chemo. The plan from Heart Transplant is to do weekly echos and re biopsy in 2 weeks to make sure the rejection is gone. From the Oncology side of things we have taken a few steps back because of the episode of rejection. We have had to go back and repeat Cycle 1. We have started this today, and will have a lumbar puncture with chemo tomorrow. We will repeat cycle 1 (the reduction stage), and then jump back to cycle 3. Unfortunately we have had to make the protocol up as we go along for Julia. We have had to take out one of the chemo drugs because it is hard on the heart, and oncology is not comfortable giving it to her.

As you can see things are very confusing. Right now we are really stuck between the heart and the PTLD, and unfortunately in order to help one we could comprise the other. We are all in agreement that the heart is priority right now. This episode of rejection could have cost us the heart and although we were able to catch the rejection in time (thank God), we have potentially caused harm to the PTLD. Julia's oncologist is amazing, and I am fully confident that she will come up with the right plan for Julia. We will all work together in order to do what's safest for Julia.

Once again Julia has proven to be the exception, but this time she really has everyone puzzled. She doesn't follow the rules, she makes them up as she goes. I thank God everyday that she is so strong because this is what has and what will get her through all the obstacles that come her way. The last week has been incredibly hard, and being back in the ICU was devastating. You can imagine that with a total of maybe 5 hours sleep in the last week, no eating, way too much coffee, I am absolutely physically and emotionally exhausted.

I am sorry to be ignoring everyone right now but I need time to re energize as I feel completely defeated right now. I do ask that you all continue to pray for Julia as she continues on this long and hard road to recovery. And if possible please ask that she get a break some time soon....no more complications!!!!!!

Sincerely,
Nadia