March 6 - a harrowing experience comes to an end.

Here is what I hope you'll find interesting but it sure wasn't fun! [Note I did revise it to explain some medical terms and lingo ... sorry about that!]

Two days before chemo (March 1), Dr Luznik told me to stop the ibuprofen (it would mask fever in the BM transplant) and the IDHIFA (Thursday).  Friday, the Hickman catheter was, not a problem. Went out to eat with Jan and Justin and Aaron (our two sons who helped us) and I could barely walk (IDHIFA bone ache off the ibuprofen - noted side effect of IDHFIA).  Saturday, got the chemo without a hitch.  The aches and pains of the MDS (myelodysplastic syndrome) (and IDHIFA) came back.  I spoke with the attending on service, Dr Imus. How gave me OXYIR 5 (a low dose oxycodone since I can use Ibuprofen or tylenol).  I had a vague chest ache at the time but thought it was the bone ache.

Through Saturday afternoon, the vague chest ache got slowly worse.  By the evening, I could NOT even watch a basketball game I look forward to every year, the Duke-UNC game.  At 2:30 AM, I awoke with the continued chest ache but now ~8/10. I awoke Jan.  She took my BP (blood pressure).  BP 70/50 (which is very, very low). We called the Johns Hopkins IPOP (Cancer centers inpatient/outpatient) emergency number.  They suggested we come by car.  We came right away – it was tough getting to the car!  They met me at the door and whisked me up to IPOP.  BP 80/60, O2 Sat 84%.  Put on O2, IV fluids started. BP 90/60. Closer to my usual BP of 105-110/70.  Morphine helped while they worked up the chest pain.  The chest xray was negative (had some atelectasis [micro collapse in the lung] – it hurt in my chest to take a deep breath).  O2 Sat up to 94% [normal is more like >96%) on 3 Liters of oxygen.  Started to feel a little better.  Lab work up for myocardial infarction [heart attack]was negative (Troponins, Creatinine kinase are two heart enzymes tested for).  EKG revealed pericarditis (This is swelling and inflammation in the sack around the heart)!  C Reactive Protein 15 and the Sedimentation Rate was 55 [tests for inflammation] – a lot of inflammation going on - that is, very high results. Some oral prednisone, colchicine and aspirin started.  By next AM, Sunday, felt nearly normal. At 7PM, didn’t feel well.  Atrial fibrillation with a rapid ventricular response (Atrial fibrillation is a chaotic fast heart rhythm in the atria, the upper chambers of heart.  This very fast heart rhythm filters down to the ventricals that pump the blood but now at a very fast rate) !  Diltiazem IV converted me quickly to normal sinus rhythm (the normal rhythm in the heart).  Monday, the Echocardiogram (sound wave exam of the heart) showed a small pericardial effusion (confirming the pericarditis - the effusion is a layer of fluid between the heart and the pericardium that is not normally there).  TURNS OUT the 'amazing' drug IDHIFA which brought down my blast counts in my bone marrow was the culprit.  By going off the ibuprofen, it unmasked a pericarditis!.  Cardiology at Johns Hopkins came by and stated I should switch out the aspirin and continue the colchicine. They also suggested I stop the diltiazem.  OK… I got that and who was I to question?  Besides I felt a lot better…    Discharged home.

Finally, we got back to the apartment at 6:00 Monday night.  Wasn’t hungry but around 7pm I felt my heart beat in my throat.  Pulse irregular.  Vague malaise and a strange sort of anxiety.  Welcome to atrial fibrillation!  What a horrible feeling to have. My ALIVECOR acquisition device (KARDIA app) showed Atrial fibrillation with a RVR (rapid ventricular response) all over again.  Call to the on-call doctor.  We discussed diltiazem orally vs ER.  We opted for diltiazem (I just didn't want to go back to the hospital if at all possible).  Got to a 24 hour pharmacy to pick up the Rx the doctor had sent in (interesting experience in downtown Baltimore just before midnight).  After 3 doses of the diltiazem, I converted to normal sinus rhythm at 5:30am.  With pericarditis inflammation treated and the Afib controlled, it has pushed back the transplant schedule two weeks (possibly LONGER, they have not gotten back to me).  Probably just as welcome break to prep for the transplant (this time without the IDHIFA mucking things up). I am weak as a kitten.  The oncology attendings have their case conference this AM to decide on further delay or not, etc, etc.  Prayers that we stay on a new schedule and nothing else happens!