Category Archives: Fibrillation

Atrial Fibrillation

A Beautiful Colorado Day, But…

It’s a beautiful Colorado summer day.  The sky is blue from horizon to horizon.  The temperature is a comfortable 80 or so.  Just had a four and a half day walk to clear my head and enjoy being here.

But, I saw my urological surgeon for a checkup this morning.  The bladder cancer has come back.  I will have to undergo the same procedure that I had one year ago and probably some other treatments after that to try to prevent recurrence.  I was told that there is a 50% chance of recurrence a year ago.  My brother David has also had all of this happen to him just six months ahead of me.  For both of us, there is a high survival rate if it is treated quickly.

In addition, I had a blood test for blood sugars today and the results are already back.  Slightly higher than the maximum range. There will be all kind of diabetes noise from the doctors.  I will have to make sure that they understand that Sandostatin LAR that is injected into my rear end every 28 days for Carcinoid cancer is known to cause a lot of variance in blood sugar level in some patients.  I am thinking of trying just one injection a month meaning 20mg rather than 40 mg a month since my symptoms are very little or non-existent right now.  The only troubling thing is that Sandostatin has now been proven to slow the growth of Carcinoid tumors as well as treat the symptoms.

As of January this year, another drug called Lanreotide (trademark Somatuline) was approved for slowing the growth of Carcinoid cancer and is known to control symptoms in many patients.  I mentioned it to my oncologist a few month ago and it seemed that she had never heard of it and thinks that it is not in my HMOs formulary.  I may need to start a crusade for them to accept that.  It is known to work often for patients who cannot tolerate Sandostatin because it makes them sicker.  Specialists are beginning to switch patients who have experienced atrial fibrillation (like me), varying heart rates (like me) and varying blood sugar levels (like me) because all those can be side effects of Sandostatin. The injections are supposed to be less painful as well.  I wonder how hard I will have to work to get that.

I am co-leader of the Colorado Carcinoid Cancer Support Group (www.cccsg.net). Last week 30 of us had dinner with Dr. Eric Liu, a renowned specialist in carcinoid who just moved to Denver and has started a carcinoid clinic.  There are so few clinics like this and he is already well known… Patients are already planning to come to Denver from all over the country.  I am planning to find a way to get my HMO to refer me to him (and pay) to form a treatment plan.  If surgery is a necessity, I will again find a way to refer to him (and pay) because he is a highly skilled surgeon who has handled only carcinoid patient for years.  He sees more carcinoid patients in a week than the clinic I go to with six oncologists sees in a year.  For my health, if I have to, I will leave the HMO and seek other insurance.  This is difficult because in all ways but the rare disease (even there they are better than many and I feel they care) I have been well cared for and I would lose all those doctors.  Leaving my insurance would be impossible were it not for the Affordable Care Act and Medicare because no insurance would voluntarily cover a someone with a rare and expensive cancer.

I guess we will have to wait and see how all of this works out.

Namaste,

Cy

 

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A Pacemaker!?!

I have had troubles with a lower than average heart rate for years.  It started before my carcinoid diagnosis, but, seemed no trouble – non-threatening.  It has gotten worse in the last couple of years.  My heart rate would drop below 50 bpm, sometimes as low as 35 and stay low for 10 -20 minutes.  My blood pressure seemed to be dropping as well. At such times, my brain felt fuzzy and I could not stand. It occurred at unpredictable times. That could create dangerous situations.

At the mid-winter carcinoid conference, I had the good luck to speak with an oncology assistant professor of UC.  He told me that a connection between that condition and carcinoid cancer is known but “exceedingly rare”.  How lucky for me! Ha!

I had an appointment with an electro-physio-cardiologist last month. In his office, my average heart rate was 52 and they want it to stay 60 bpm or more.  We determined that a pacemaker could help me. Yesterday the implant was done and I am home recuperating today.

The procedure took about an hour and I spent the night in the hospital.  Since the anesthesia was not general anesthesia but very light and intended only to be like sleep, there was little danger of carcinoid crisis.

It may take a few days to get used to but, I should feel more energetic. I will probably be able to ride bikes again safely.  In general, physical activities and changes of altitude and traveling should create fewer problems for me.

How will it affect the carcinoid cancer? I will not be able to have an MRI because they would break the pacemaker.  I have only had one MRI since my carcinoid diagnosis anyway. A good thing is the pacemaker should greatly reduce the problem of carcinoid crisis during surgery and anesthesia.

The pacemaker that I have is built to last 12 years.  It comes with a separate  communication device that hooks to the phone line and then contacts the pacemaker by radio and collects data daily and sends it to a pacemaker center where software can notify my doctors if there appear to be problems with my heart or with the pacemaker.

As of May 29, 2015, the pacemaker is successfully holding my resting pulse at 60 bpm. It does change the pulse rate upward as I move around. It has evened out my pulse  which was often bigeminy (beat.beat..beat.beat) to normal (beat.beat.beat.beat). And I woke today feeling rested and and well.

To me, this is a good decision with little risk.  I will let you know in the future if it works as hoped.

May we all have the best possible outcomes,

Cy

 

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Back From Europe – May 2014

We returned from our travel to Holland and to Scotland last night.

It was a great trip.  We stayed in Haarlem in the Netherlands for 5 days.  There we visited tulip gardens. It was just after the tulips’ peak and raining but very beautiful anyway.  We enjoyed walking all around the old town of Haarlem.  The town center is mostly foot and bicycle and many of the buildings are quite old. We visited the old church, St. Bavo Church, now called the Grote Kerk, which was built during the period from 1370 to 1538.  The Christian Muller organ in the church was constructed in 1738 and looks quite impressive.  It was played once by Mozart and by G. F. Handel.  While touring the church we had the good fortune to hear someone practicing on the organ and it was quite impressive.  We went to the Frans Hals museum which has a lot of interesting things about Haarlem as well as paintings by the old master and by other lesser known masters.  It was very good.

We also took the 20 minute train ride to Amsterdam one day.  Walked about the city and spent time in the Rijksmuseum visiting more of the old masters like Rembrandt and Vermeer as well as works by more modern artists like Van Gogh.  We tried to visit the Van Gogh museum which is near the Rijksmuseum but the line was so long that our limited time would not permit.  It was a very pleasant day with good weather.

We found the Dutch people to be very pleasant and handsome people.  In the cities, the bicycle is probably the main mode of transportation. A plus for us language impaired Americans is that they all speak english very well.

We flew from Holland to Edinburgh in Scotland.  We visited a few places there and after one day took a bus to Cellardyke where our son and his family lives (He teaches at the University of St. Andrews). There spent 5 days visiting, walking along the coast and playing with our one year old grandbaby.  He is quite adorable.  We got re-acquainted with some of the best fish and chips in the UK.

A great trip!  But… traveling with carcinoid is not always a picnic.  There were alternating bouts of diarrhea and constipation.  Not so good on long flights and bus rides.  Fortunately, my medications control it mostly.  I also experienced the fatigue common to many cancer patients.  I needed at least a couple of days to restrict my walking about and let my wife go on her own.  There was also some dizziness from the various heart stuff.  Nothing really serious but this is something each of us with carcinoid has to be constantly aware of.

May we all have the best possible outcomes,

Cy

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Cardiac Concerns Spring 2014, CT Scan News

Finally!  I have a report from the cardio doctor.

Basically:

  • There is occasionally slowing down of the heart (bradycardia).  This could be treated with a pacemaker.  They say I don’t need to have a pacemaker until the condition makes me uncomfortable.  I knew all of that already.
  • There is an irregular beat in one portion of my heart.  It beats slightly ahead of the rest of my heart.  No treatment suggested.
  • There is little or no sign of atrial fibrillation (AFIB) which was the major problem in 2012.
  • A very important finding.  There is no sign of Carcinoid  Heart Disease, which is a problem of heart valves that occurs in patients with metastasis to the liver.  I am checked for this every year.
  • No change in treatment is recommended.

So, it’s all good I guess.

On to the next thing…

At my age you cannot walk past a doctor’s office or hospital without some new diagnosis.  It’s a drag sometimes.

As you know, I have a CT Scan every 3 to 6 months to keep watch on the carcinoid.  My latest scan was March 19.  I just received the news that there is no change in the liver tumors which is good.

But, (I hate “but”, don’t you?) they have seen a lesion on my urinary bladder.  A lesion is any abnormality or damage in the tissue.  Medicos use the term lesion for tumor as well.  I am now scheduled to see a urologist for a cystoscopy (they look inside through a long tube which I know from experience is not very fun).   Yippee! Yet another doctor in my contact list.

While we do not know that this is anything serious, I felt that I should at least inform myself a little.  Searching the web, I find that

  • Carcinoid of the urinary bladder is extremely rare. If this case is carcinoid then it could be my unknown primary or it might be a metastasis (very, very rare).
  • Most lesions on the urinary bladder are malignant.
  • Many lesions of the urinary bladder are fairly easily removed and maybe cured by cystoscopy.

So what?  We don’t know at this time how any of this relates to me and my own, personal bladder, liver, and carcinoid tumors.  We are each different.  I am going to choose not to worry until there is more concrete data to discuss.

I presented the above material more as educational about carcinoid.

May we all have the best possible outcomes,

Cy

 

 

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Cardiac Concerns Continued

I am still wearing the event monitor but only for a few more days.  The cardiologist’s nurse called yesterday to tell me that so far there is little or no sign of atrial fibrillation and they believe the drug that I am taking for that is working and probably shouldn’t be changed.  There are a few occurrences of slow heart rate and it could be treated with a pacemaker but does not seem necessary unless the low rates make me uncomfortable or likely to pass out (I don’t get that feeling).  There is an irregular heartbeat but again there is no recommended action unless it make me feel bad.

So, for now,  I think we will just watch and wait.

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Cardiac Concern Part 2

As I mentioned two weeks ago (Cardiac Concern), I had to wear a Holter Monitor for a week because of a low heart rate incident.  I did that and turned it in and waited for week.  There was no call from the cardioligist, so I called them on Friday.  They were confused because they had intended to order it for me to wear for the monitor 30 days but instead it was ordered for 7 days.

I had two incidents of atrial fibillation symptoms during that time.  Those symptoms had not occurred since long before my surgery last year.  I was working on installing ceiling lights in a kitchen and apparantly working with a heavy fixture over my head brought it on.  The cardioligists did not seem concerned about that.  However, there was at least one event that I did not detect but the Holter Monitor did detect when my heart rate fell to 35 again.  They still don’t know why or what to do.

They have decided that I must get fitted again tomorrow for the monitor and wear it for 30 days this time.  I hate that because going to the gym is embarrassing with the electrodes on your chest and the wires hanging down and also I wouldn’t get to use the therapy tub or steam room.  Oh well,  maybe we will figure it out this time.

Again… More will be revealed. Maybe.

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Cardiac Concern

About two weeks ago, after a workout and lunch, I stood up from my desk and felt a distinct fuzziness in my head and it did not go away. I immediately grabbed a heart rate monitor that I have in my office and watched the numbers. My heart rate was 35. It climbed back to 55 after about 15 minutes and I felt fine.

Early this week, I mentioned the episode to my Oncologist during my quarterly visit with her.  She messaged my Cardiologist who conferred with my Cardiac Electrophysiologist (that’s a mouthful).  My Cardiologist had me come in yesterday and have an echocardiogram (ultra sound of the heart).  Also, I got fitted with a Holter Monitor that I must wear for a week.  A Holter Monitor is a little black box that is hooked to EKG style sensors on your chest.  It has a “Symptom” button that you press whenever you feel any cardiac symptoms occurring.  It then saves the 30 seconds prior to the button push and some time after the button push.  The monitor also saves any cardiac events that it senses even if you have not pushed the button.  When the device’s memory is full, it beeps and the patient has to dial an 800 number and have the monitor send it’s data to a collection point.  Employees at the collection point may ask you what you felt and record that data as well.  Your doctors can then review the data online.

I have worn one of these before when I was having a lot of atrial fibrillation.  At that time there were a lot of symptoms.  This time, I think there will be few or none.  Since my liver surgery last year, I have had no symptoms until two weeks ago.  I believe there is some connection between this heart slowdown (bradycardia) and carcinoid tumor or perhaps the Sandostatin injections that I get every 4 weeks.  However, years before I was diagnosed with carcinoid, my resting heart rate could fall to as low as 42.  Was it because I already had developed carcinoid tumor?  No one knows.   My doctors are doubtful of a connection between carcinoid and afib or bradycardia for that matter.  There is a known connection between Sandostatin and afib about 15% of the time.

“More will be revealed.”  Maybe.

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My latest music composition – 2013 April 11

After about 4 months of struggling to produce something, I have finally finished something that I started in December.

I have not been idle.  There have been a number of video tutorials in mixing and others on music production.  Some specially good ones are available at The Recording Revolution. They are easier to find on youtube.com (search for “5 minutes to a better mix” or “the recording revolution”). I’ve also been studying a book about drum patterns or grooves for various genres of music.

Today I am posting my new tune “Funk Mystery”. It is a mix of various genres. I hope it pleases some of you.

Funk Mystery, Electronica – 11 April 2013.

In other news:

Last week I had an echocardiogram and my cardiologist says that I am healthy enough for surgery.  I will let everyone know when that is scheduled.

Next week I am going fly fishing with three friends for three days.  We are really looking forward to catching the first fish of the year!

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A little more about me and more about Carcinoid Tumor

Today I visited my primary care physician.  My purpose was to get an EKG because my cardiologist was concerned about low pulse rate and high blood pressure last week.  Also, to have the doctor look at my back. I have had severe back pain every morning for about two weeks.

Good News! EKG was great! Also, blood pressure and heart rate were very normal.

My doctor thinks that the back pain is my sciatica which I have had for 4 or 5 years.  He prescribed an anti-inflammatory. He also has had me schedule a bone scan because carcinoid cancer can metastasize to bone.  We do not think this is the case with me but just want to make sure.

Carcinoid Metastasis: Carcinoid cancer can metastasize to the liver (the most common, that’s me), local lymph nodes, bone, ovaries, prostate, skin, and maybe lung.  Obviously, we carcinoids (and our doctors)  have to be observant about where we have pains and aches.  I recently read that only 10-15% of carcinoid tumors metastasize.

In the past few months I had two instances when I became enraged at complete strangers.  I felt uncontrollably angry.  This is not me. I have been concerned about it.  I’ve also felt that I fail to remember whole conversation more than I used to.  Just recently I read about this:

Carcinoid Rage: Mood swings are well known in cancer patients but it seems that carcinoids get a special kick from the strange brew of chemicals that our tumors mix into our blood.  Researchers believe that mood swings and memory loss are a side effect of carcinoid tumor and that Carcinoid Rage is a good description.

Of course, now that I know this, my only good option may be to hit the meditation pillow more often and learn to strengthen my compassion and control of emotion.

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Bicycling in January

Today a friend of mine called and asked if I wanted to go bicycling.  It had not even crossed by mind.  It is easy to fall into a rut and think the winter weather will be too cold and uncomfortable.  Also, it’s easy for me to think that with carcinoid tumor and atrial fibrillation that I should not do it in cooler weather (not true unless perhaps I am having active symptoms).

I went with him this afternoon and we rode 20 miles.  He is 7 years older than I am and could ride the hills faster.  Going to the gym and riding stationary bikes does not prepare you for outdoor riding on a real bike very well.  The temperature was around 52 degrees fahrenheit and there was a chilling breeze, but I have gear for much colder so I can ride fairly comfortably.  We  rode around Cherry Creek Reservoir to the top of a hill where we could see the front range partially (because it was mostly cloudy).

Very nice.  I am lucky to have friends who ask me to participate which reminds me that I can and should do the things that make me happy.

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Eight days in Scotland

Last night we returned from eight days in Scotland.  As usual, we had a fun trip. Often it was rainy and cold, but that’s what you get in Scotland in October.

The first couple of days were spent in Edinburgh.  We walked the Royal Mile from Holyrood Palace at the base of castle hill to the castle at the top of the hill.  We spent time at the National Museum of Scotland and also in various shops. We stayed at the Ibis Hotel which is about half way in the Royal Mile and an easy walk up the hill from the train station. As usual, we ate at pubs and the inexpensive vegetarian stuffed baked potato shop.  One of our evening meals was at David Bann’s which is an upscale vegetarian restaurant which never fails to deliver good food.

Then came three days in Anstruther/Cellardyke.  These are two old fishing villages so close together that you cannot tell when you move from one to the other without a sign.  Our son Derek and his wife Kat live in Cellardyke.  They bought and remodeled a wonderful 150 year old fisherman’s cottage built right into the seawall.  On really high tide days, North Sea waves hit their home. We stayed in Anstruther at The Waterfront, which is a restaurant and bed and breakfast. It is only about four or five blocks from Derek’s house. The Waterfront is also near the Anstruther Fish Bar which has awards naming it the best fish and chips restaurant in the UK. They are very good!

Derek is a lecturer at St. Andrews University and we like the town of St. Andrews a lot, so we spent some time there shopping, walking the beach, eating and drink coffee. Derek drove us to the village of Falkland where we toured the Falkland Palace. It was an impressive tour of a restored renaissance palace. The drive through the Scottish countryside was nice as well.

We took a bus across Scotland to Glasgow to spend three days there. This is the largest city in Scotland and the third largest in the UK.  Although the city is ancient, unlike Edinburgh, very little of the ancient buildings still stand. It was renovated during the industrial age and after the World Wars.  One of the few ancient buildings still standing is Glasgow Cathedral which was started in the 12th century.  We attended the Church of Scotland evensong service there.  It was quite beautiful.

Our second day there, we toured the Glasgow School of Art which was designed and built by Charles Rennie Mackintosh, a famous Scottish architect. His style spanned both Art Nouveau and Art Deco.  He designed more than just buildings; he designed the interiors, the furniture and even the silverware and plates for his buildings.  We also ate at the Willow Tea Room which is a reconstruction of one of his famous interior designs. Unfortunately, for the rest of that day, I was somewhat ill from the cancer and afib.  Laurie was able to go to the necropolis which is a large Victorian cemetery near the Cathedral.  She tells me that it was interesting and beautiful.

The next and final day of our tour we walked a good distance through the city and visited the Kelvingrove Art Gallery and Museum.  It is the most visited attraction in the city and has some spectacular exhibits.   We took the guided tour and visited some of it ourselves.  There was a good exhibit of the Glasgow Boys who were a well-known group of Impressionists and Post-Impressionists who worked in teh 1880s and 1890s.  The art was great! However, the most impressive piece in the museum to me was Salvador Dali’s Christ of St. John of the Cross.

After touring the Kelvingrove, we walked to the Riverside Museum which is a very good transportation museum. Trains, bicycles, and lots and lots of automobiles. These are mostly British, so they seem a little strange to our eyes sometimes.  It was a good museum.  Then we had a long walk back to the hotel and another pub meal at our favorite pub in Glasgow: the Horseshoe Bar.

All in all, it was a satisfying trip, with a minimum of disruption from my ailments.

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A fun visit from my brother

My brother Larry is visiting here in Colorado.  He is from Kentucky and has visited before, but this time we have had a chance to do more touring than before.

We had a wonderful ride on Tuesday to Georgetown in the mountains.  We took the narrow gauge train ride there. It has been years since I did that and we had fun.  From Georgetown, we drove over Guanella Pass (11,600 ft.) and had lovely views of the changing aspen trees.  From the pass we drove down to US  285 and back to Denver.

On Wednesday we went flyfishing in the South Platte river near Deckers, CO.  Larry had tried flyfishing unsuccessfully once before. On this trip, we both caught fish and had a wonderful scenic drive.  The fishing was great fun and for the record the Platte is a well known and sometimes difficult fishery. We saw a flock of turkeys on that drive.  Unfortunately, I suffered some symptoms of atrial fibrillataion (afib).  I had some dizziness and difficulty breathing and had to get out of the river and sit for a while on the ground.  My  head was still fuzzy after our lunch so I let him drive home.  However, we did take another scenic route.  That night I suffered the night sweats that are a symptom of the carcinoid tumor and the next evening I had the chills that are also symptomatic of the cancer.

I have been in touch with my cardiologist and will probably wear a heart monitor again next week. He thinks that I an having afib symptoms again.

On Thursday we had a long walk in Denver and also a tour of the Denver Mint.

Friday we took another mountain drive.  I took him over Loveland Pass (11,990 ft.) where we got out of the car and walked a little.  I had no more difficulty breathing than he did!.  From there we drove around Dillon Reservoir, through Dillon and Frisco (we stopped there for a while) and Breckenridge and over Hoosier Pass (11,542 ft.) to Fairplay where we stopped for lunch.  Heading back toward Denver, there were a lot of people parked at the top of Kenosha Pass (9,997 ft.) so we stopped and found that we had a good view of an adult moose in full antlers! Further toward Denver, we left the main road and drove to Pine and from there through Sphinx Park on an extremely narrow and twisty and scenic road and back to the main highway and back to the highway.  A great and scenic drive!

Tomorrow we visit a nephew in Ft. Collins and Larry will stay with our sister in Denver, play golf with our brother-in-law on Sunday and leave for Kentucky on Monday.  It’s a pleasure to have him with us for a while.

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Fishing/Camping in Wyoming

I just returned from 4 days camping and fishing in Wyoming.  Two friends and I camped for two nights on the North Platte River.  It was wonderful weather and the fishing was pretty good.  It was sad how low the river is because it is such a dry year.

The third night we stayed in a motel in Saratoga, WY.  Had great steaks a nice time in that town.

Finally, today we had planned to float several miles in our raft that is outfitted for fly-fishing but there is not enough water in the river to get a good float! So, we just fished a spot we had not found before (successfully) and then headed back to Denver.

It was a great trip and I had no symptoms from carcinoid tumor at all.  I also only had some very minor loss of wind and dizziness from the Atrial Fibrillation.

It is great to feel that I am getting stronger.

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Heart in the Mountains

I have just had two wonderful days in Frisco, Colorado. I stayed with my friend in his condo and we fly fished, walked, attended evening concerts.  The weather was good, the fishing was good and one of the free concerts was fabulous (Queen Nation which is a Queen tribute band).

I had no atrial fibrillation symptoms at all in Frisco which is about 9,000 ft. altitude.  The last time (before the cardioversion) that I was there I was very sick and felt I could not breathe.  Even fishing a stream at over 10,000 ft., my breathing was probably no worse than a person who was not accustomed to the altitude.

The cardioversion is working!  I now need to try bicycling more.

I had a followup EKG on Monday and there is no difference from where it was after the cardioversion two weeks ago.  Let’s hope that it sticks for a while.

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Cardioversion appears to be successful

This morning, I had a procedure known as a “cardioversion“. This is a procedure in which the doctor shocks the heart much like you see on TV except that, in a cardioversion the purpose is to make the heartbeat get back into rhythm.

At this time, it appears to be a success.  The atrial fibrillation is gone.  It is replaced by an arrhythmia called a “bigeminy (bi-gem-i-ne)”.  This reflects a slightly abnormal heart rhythm that is usually of no serious concern in the absence of other cardiovascular disease. This condition describes a state where your heart alternates one “normal” beat with one “premature” beat.

As the afib was causing a lot of discomfort and inconvenience (like cancelled fishing trips and no exercise), this result makes me happy.  We will not know how long the treatment will remain effective until it stops.  The cardiologist says that with luck it may be good for over a year.

There was one problem that made the procedure a little more stressful. (I find it stressful when someone is going to apply a strong electric shock to my heart!)  The warfarin (anticoagulant or blood-thinner) was not at a high enough level in my blood stream.  The doctors had to do a “Transesophageal echocardiogram” which is a procedure of placing an ultrasound device down your throat and into the esophagus to get it close to the heart.  It is very uncomfortable.  However it enabled them to determine that there were no blood clots in the atrium of my heart and to go ahead with the cardioversion.

I am told now that I should start biking, fishing and exercising to “test it out”.  All is good at this time.  Thanks to all for the positive thoughts and the prayers that were aimed my way.

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