A-Fib Patient Story #16
Very Sensitive to Medications—She Gets a Pulmonary Vein Ablation
By Beverly Reynolds (70 year old grandmother), 2006 and update 2007
My journey through arrhythmia (Atrial Flutter and then A-Fib) began in the summer of 1996 when I was 60 years young. I was diagnosed with atrial flutter. Atrial flutter made my heart rate extremely high, and I had difficulty breathing and a tight chest. I was also extremely nervous and sensitive. As time went on the episodes became closer and closer. My cardiologist tried many of the antiarrhythmic drugs on me, but I could not tolerate any of them. I was terribly sick and had hives with Quinidine. Rythmol made my mouth, eyes and sinuses so dry that I had sores in my mouth and finally could hardly swallow food, plus nausea, headaches and my breathing was becoming more difficult each day. Neither of these antiarrhythmic drugs abated the flutter. Finally, I tried Verapamil to just keep my heart rate down. My body was so overtaxed that my general health was really bad.
During this time I had many medical cardioversions and finally several electrical conversions.
My cardiologist believed that my flutter came from my having had a pericardiectomy (surgical removal or stripping of part of the Pericardium, the membrane surrounding the heart, to remove calcium deposits) 36 years earlier. The pericardium had calcified, probably from a virus, and did not allow my heart room to beat properly.
My insurance company is Kaiser, and during this period Kaiser did not do Pulmonary Vein Radio Frequency ablations. I kept reading about flutter and researching the internet where I found an article about ablation and requested that I be referred to the University of Colorado Medical Center. My cardiologist was reluctant, but I had run out of options. So, in June 1999 I had a right atrial RF ablation. There were some tough weeks following this six hour procedure (rapid HR, very slow HR and irregular beats), but by September I once again had good BP and a 77 HR. The university doctors said I was cured!!!
My next episode with a rapid heart rate began six years later. This time I was diagnosed with A-Fib in September 2005. What a disappointment! However, I was very thankful for the six years of relative good health. I knew going in that I would not be able to tolerate the antiarrhythmic drugs; but in order to be referred to a clinic that performed PVI ablations for AF, I first had to satisfy Kaiser that my A-Fib could not be controlled with antiarrhythmic drugs. This time I tried Flecainide, but after a week it gave me a headache that was unbearable. Finally I was able to take 360 mg of Diltiazem that did not keep me out of A-Fib, but kept my heart rate down. I also took Coumadin, Digitalis, and Maxide that helped me with the edema, a side effect of the Diltiazem. I was very symptomatic, and by the beginning of May 2006 I was in persistent A-Fib. Again I tried a cardioversion, but it only lasted 2 days.
I started searching the Internet again where I found Steve Ryan’s site, which was a Godsend as it armed me with the information I needed to convince my Kaiser EP doctor to again refer me outside the Kaiser system. Must comment that my Kaiser EP doctor took a lot of time with me, but was very much against my wish to have a PVI ablation and told me all of the terrible things that could happen during this procedure. This did bother me, but I kept searching the Internet, received many encouraging emails from Steve and finally picked Dr. Chris Cole in Colorado Springs to do my PVI ablation.
I really wanted to go to Bordeaux, France, but the waiting list is long – as it is most places, and Kaiser will not cover medical expenses outside of the US. I read and heard many good things about the Cleveland Clinic and a Dr. Natale, but again the wait was too long as I was beginning to feel desperate. I felt that my heart was getting worse each day. I was finally able to get the Diltiazem down to 240 mg a day and that really helped the edema. Dr. Cole worked directly with Dr. Natale in Cleveland before coming to Colorado. Also, Dr. Cole is on the leading edge of the Cryo-Cath ablation and has begun a two-year study of the Cryo-Cath Balloon catheter. I was not eligible for this procedure as I was in persistent AF and also have a prolapsed Mitral Valve.
In September 2006 I was referred and contacted Dr. Cole’s office to scheduled an appointed. He told me that he could definitely improve my A-Fib; but because of the complications I had, he would only give me a 50-60% chance of a cure with the first PVIA, but that I would at least be able to control the A-Fib with medications. This seemed reasonable to me, and the fact that he said the procedure would only last about 3 hours was the deciding factor for me. However, I had to wait until December 12, 2006 for the procedure. Those three months seemed like they lasted forever, because I was losing ground each and every day. During this waiting period I had many moments of indecision. The only thing that made me go through with it was I could no longer tolerate the A-Fib.
Three days before the procedure I stopped taking Coumadin and instead injected myself with Lovenox 60 mg (an anticoagulant) each day. My husband (who also has A-Fib and takes Amiodarone) and I arrived in Colorado Springs from Denver, the afternoon prior to the scheduled procedure. At 6am on the 12th I was admitted and prepped for the ablation which began at 8 am. The EP room looks like something from Star Wars with many TV monitors and weird looking equipment everywhere. I asked to be put to sleep during the procedure. I was not completely out, but I remember very little until being taken back to my room with all of my family following. I was in my room by 11:30am. Dr. Cole did tell my family that he had a hard time getting me back in sinus rhythm and then my HR was only 35. Also that my heart was scarred from the A-Fib, but hopefully in the next few months it would “remodel” itself. At first he was concerned that I might need a pacemaker.
I was given medication to irritate the heart to see if I would go back into AF. It did not, but began uncontrollable shaking. As soon as the medication was discontinued, I was fine except for a very dry mouth, and my HR continued to go up. About 2 pm, two technicians arrived to pull out the tubes from both sides of my groin. I also had a tube in my neck and several IVs. The tubes were about 11 inches long, and then pressure was applied for 15 minutes per side until they were sure I would not bleed. Then began the long hours I had to lie perfectly flat. About 10:30 pm I was finally able to sit up a bit and move my legs. What a relief! I had some bruising where they inserted the tubes.
Dr. Cole and I had decided to try me on Tikosyn (a newer antiarrhythmic drug – 250 mg twice a day) after the procedure. This required staying in the hospital an additional two days to monitor the effects of the drug. The day after the procedure I was feeling tired, but great just being out of A-Fib. About 9 pm though I began to have tachycardia and was feeling quite uncomfortable with a 120+ HR. I asked if they could give me something to lower the HR. That was a big mistake! Also, about this time the hospital staff decided it needed my private room and began moving me to a double room. Then I was given three different medications for the high HR (Diltiazem, Lopressor and ?)
s I mentioned earlier, I am very sensitive to medications; and, if I had been more lucid, I would not have taken all three drugs. Very quickly my blood pressure dropped to 40/30 and 35 HR. I had many nurses working on me trying to get my BP and HR up. I was given more medications by IV to counteract the prior meds. Quickly I got very ill and had the dry heaves. I am not a moaner, but that night I really thought it was curtains for me. This went on all night, but by morning I was once again recovering. I do not believe that I ever went into A-Fib during all this time. When Dr. Cole finally checked on me about 11am, I was doing okay and he decided I could be released that afternoon.
I cannot tell you how relieved I was to leave that hospital (which incidentally was very dirty too.) I know they over-dosed me, and my roommate confirmed this by saying she heard everything and how concerned they were over my reactions to the medications. I do not know what all I was given, but I was not a happy camper. Dr. Cole reviewed my monitoring strips the next morning and thought they were okay.
1/15/2007 – My one month follow up exam. Had to wait a couple of extra days because of all the blizzards Colorado is having this winter. I saw Dr. Cole’s PA. My electrocardiogram was very good. I did have some breathing problems earlier (I also have asthma – controlled), so I needed to have a CT scan of my heart and a “Sniff” test – to make sure my diaphragm was not injured during the procedure. All turned out fine.
I have been back on the weight machines (3 times a week for 30 mins.), but get pretty tired out by evening; so I guess I need to cut back to a shorter time and increase exercise gradually. I tend to forget that my heart was over-taxed for so many months and that it will take time – 6 months to a year.
My next checkup is in March and I’ll be sending an update. Meanwhile we are going on a cruise to Hawaii, and I’m sure this will be a complete cure for me!!!
E-mail: bevrey (at) comcast.net