Myelodysplasia & Atrial Fibrillation & Warfarin

[Barry D]

My mother, Ann, was diagnosed with MDS category RA/"Low Risk" in 2005. She was symptomatic when diagnosed (anaemic, breathless etc), and since diagnosed has remained the same, with some sporadic episodes, though fortunately none major. Her blood scores are broadly 60% of the normal range, and fluctuate up and down, though not significantly. Apart from this she has been active, reasonably healthy and independent - using a buggy to play golf but still trying! In June 2008 she was hospitalised with a serious chest infection. She was diagnosed with atrial fibrillation and atrial flutter while in hospital, though it was thought to be due to the infection. Unfortunately the a-fib/flutter has persisted and progressed, and has overtaken the MDS as her principal daily health problem. She now has an average of 2 episodes weekly of a-fib/flutter lasting 24 hours. She has just started on 3mg of warfarin (coumadin) and is being advised to have an AV node ablation and pacemaker. Her Cardiologist is the 'silent type' and not possible to talk to other than during consultations, that are spaced 8 weeks apart. I am concerned about (a) long term treatment with warfarin in a patient with MDS and (b) whether the AV node/pacemaker recommendation is a medium term 'palliative' solution, being suggested because the patient has MDS anyway. I would be very grateful to hear comments from anyone with experience of MDS in combination with atrial fibrillation/flutter and/or warfarin treatment. Thank you.

[helen c.]

my husband has pacemaker and is on warfren and has been probably for 10 years also has 2 valves repaired. he has been in treatment for raeb-1 intermediate mds for a little over 1 year he is on 3 antibiotices and receives vidaza treatments every 4 weeks followed by 1 week of procrit and neupogen shots he has been transfusion independent since march of 2008. he is doing well hopes this helps. theymonitor his blood every week and adjust warfren as needed

[Hawaii Bill]

Hi Barry,
FWIW, I have Aplastic Anemia and suffered from episodes of rapid heart beat (150/min) due to atrial flutter since 1977. In Aug of 2007 I had a cardiac ablation alone, no pacemaker, and the problem has been resolved ever since. My only regret is that I did not find an electrophysiologist sooner. I had to have a platelet transfusion during the ablation, but that was not a problem.

[Barry D]

Helen, Hi. Thanks for your response, much appreciated. Its good to hear of someone getting on ok with MDS, a pacemaker and taking warfarin. Best wishes to you husband.
Bill, Hi. Thanks for your response also. I wonder was your catheter ablation procedure an AV node ablation, or a PVI (pulmonary vein isolation). I am guessing it was a PVI. If so, I would be very grateful to hear how the procedure itself was, and whether it worked first time for you? Thanks again.
Best regards, Barry.

[Hawaii Bill]

I honestly cannot say for sure, but I think it was AV node. I had "Type I Atrial Flutter", according to the electrophysiologist, which he said often presents as atrial fibrillation. There was never any mention of ventricular involvement.

The procedure was simple, but it had its moments. They transfused platelets simultaneously, and I was awake, but made groggy. They make an incision in the groin area and place a couple of catheters into the vein there and feed them into the heart. They then use cold and hot destruction to alter the current pathways in the heart. There were some times when they were ablating tissue when my chest got pretty uncomfortable.

After the procedure is done, you have to keep from moving the leg where the incision was made. They put sandbags on my lower body to keep it immobile for 4 hours. THAT was interesting.

The ablation completely eliminated the problem, and I was immediately taken off the diltiazem, which had been messing up the cyclosporine level for my AA.