Diagnosis: Acute Myeloid Leukemia (AML). A Journey

After more than a week of coughing without ceasing to the point of gagging and retching, George finally decided something needs to be done NOW. Of course, we had messaged his team at UPenn and they didn’t seem particularly concerned. Had they seen George’s extreme exhaustion, his inability to walk to the front door or take a shower without becoming completely winded, and his tears of frustration, perhaps they would have reacted sooner. Who knows?

Jessica, the nurse with Penn Home Infusion came at her usual time – Monday morning. I left work and came home when she arrived so I could be present when she was there. I explained what I had been witnessing – the heartbreaking suffering of George – and she saw it too. He looked haggard and worn out. He was winded. He was coughing. He has lost weight because he hasn’t been eating. So, she called team and they recommended he go to the Emergency Department at UPenn.

After George showered, he was so smoked that he was unable to pack his bag. So I packed it for him and we headed to the hospital.

He was called back pretty quickly – a marked changed from the last time we were there! He met with different nurses, who took blood cultures and his vitals. Then a nurse came in with an EKG machine and they hooked him up to that.

After that, he was taken down for an X-ray of his chest. When he returned, he was moved to an actual ED room with a gurney.

Once we were in the room, it wasn’t long before someone came to wheel him down for an IP CT scan.

After a short while, several different doctors came in to see him. He was told that he had pneumonia and that it looked worse than the last time they took chest X-rays. This, after just finishing a round of antibiotics (Augmentin) which apparently did nothing. So, they hooked him up via IV to a heavy duty, broad spectrum antibiotic called Vancomycin and another one that I can’t remember.

The doctors came in and said his CT scan showed pneumonia too and now they are waiting for the blood cultures to come back so they can zero in on what type of pneumonia so they can target treatment. One doctor said they hope the cultures come back negative because it would be bad if any disease had moved to his blood stream. That was scary. So we are hoping they are negative! Not sure how long it takes for the culture to grow.

George’s labs also showed his platelets and blood counts were low, so the doctor said they will give him some blood. That should help a bit with the exhaustion as well. The weird thing is, even with his low blood counts and being so short winded, his O2 levels are good! We can’t figure that one out.

At about 9:30, the doctor told me I should go home and that George was going to be admitted to the hospital. I am so glad he is being looked after and taken care of and TREATED. It’s been a stressful time watching him cough himself to tears and not being able to eat because of the cough (and also because his chemo makes everything taste like garbage).

I am scheduled to leave for Greece a week from today. Obviously, that is on hold for now. If George is not stable, I will cancel my trip and stay here with him.

He’s been through so much and some days, it’s hard to stay positive. We are in such a different place than we thought we would be in 6 months ago. He has gone backwards instead of forwards after his bone marrow transplant. It’s demoralizing, depressing, frightening and sad. But, we try to remember – one day at a time and try not to focus too much on the future, which is uncertain.