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Old 15-01-2018, 10:05   #1
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A hiccup in our plans - congestive heart failure

I'd love to hear from anyone who is (or knows someone) sailing and/or cruising (coastal or offshore) with congestive heart failure.

Our plans to cut the dock lines on August 4th are now delayed for a bit due to a new congestive heart failure diagnosis for Mr. cthoops. He's 58 years old and was diagnosed with atrial fibrillation approximately seven years ago, but it didn't really bother him. The doctors aren't sure if the damage was caused by a long-running undetected afib or if something else like a virus caused the damage which triggered the most recent afib. Doesn't really matter at the moment.

We already know that even after things settle down the longest interval between cardiology appointments will be three months, so we are adjusting our plans accordingly. His doctors have already said that the next one to two years will be very important so we aren't going to leave before then, but in the meantime it would be nice to connect with anyone experiencing the same situation. PM is fine if you would prefer.

Thank you.
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Old 15-01-2018, 12:22   #2
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Re: A hiccup in our plans - congestive heart failure

If you can, find a cardiologist who is also an enthusiastic sailor. It is that someone who loves to sail will hear you guys' desires and plans with clearer ears than most land lubbers. You can use this person as your 2nd opinion doc, and really pay attention.

I learned this by having a spine surgeon who understood that I wanted to still do spinnaker trim, and therefore, instead of a fusion, I had spinal decompression relief surgery. He gave me over 10 more years at it, for which i am very grateful.

Good luck and good health to both of you.

Ann
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Old 15-01-2018, 15:06   #3
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Re: A hiccup in our plans - congestive heart failure

Important things to know are,

How was he diagnosed? Did he have an echo cardiogram, cardiology evaluation, and clinical+xray+ lab findings consistent with CHF? High output failure could have occurred with prolonged tachycardia (fast heart rate) we call Afib RVR (atrial fibrilation with rapid ventricular response) that reduced his cardiac function. A good sit down with his cardiologist is priority #1 for figuring out what he can and should not do.

What is his Ejection fraction? If its over 50% no other significant medical issues, and they do not suspect coronary artery disease your basically in the clear, 35-50% caution but no need to think life is over, EF less than 35% will need some careful planning.

How is his health otherwise? Other comorbidities, diabetes, aortic stenosis, obesity, renal insufficiency, emphysema all can impact the CHF.

Medications, let's hope he is NOT on coumadin (aka warfarin) for his anticoagulation as this is a roller coaster medication with frequent lab tests. I think Pradaxa, Elliquis or some of the newer anticoagulants are far preferable, and don't require you to find a lab every 2 weeks for blood tests. He will probably also be on a medication to remove excess water via kidney stimulation, and a heart rate controlling medication for his Atrial Fibrillation.

CHF is fairly manageable in a person with a decent EF, no significant other medical issues with a strict adherence to diet, medication, and salt/water intake (that is salt and water intake NOT saltwater intake).

Get in shape, stay in shape, lose weight, cut out vices like smoking , and excessive drinking all are the old standbys we preach, but for a reason, they work.
Get a good scale, document your daily weight religiously. Water is heavy, tracking your weight is a good way to know when your retaining it (6 lbs over night isn't blubber it's water) and use a medication to increase urine output to get the weight off, lasix is the most common.

Again, Please talk to your cardiologist. I tell my patients "the only person who should know more about your condition then me, is you!" Be specific about the plans you have. Ask until you have the answers you need.
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Old 15-01-2018, 15:35   #4
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Re: A hiccup in our plans - congestive heart failure

Dockdoc-
There are "at home" testers for coumadin users. Not cheap, but now 10+ years on the market and lab accurate.

But more to the point, is the problem under control and stabilized? How likely is it to lead to a crisis event where emergency medical treatment NOW, not in a day or two, is going to be important? An extensive workup and second opinions, specifically including "How important is immediate ER care?" should clarify things somewhat.

There are other complications that the doctors should be able to advise on, i.e. if you are on blood thinners and you get a serious wound offshore--you're got a problem. It can often be addressed, but it has to be anticipated.
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Old 15-01-2018, 15:55   #5
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Re: A hiccup in our plans - congestive heart failure

As DockDoc writes, the ejection fraction will probably be the deciding factor. I have a friend who continues to cruise the Caribbean with AF and decreased EF. However, he stays close to first world medicine and no longer does trips over 3 days.

Cruising the US coast, the Keys and Bahamas should not be a problem with moderate disease but you do need repatriation insurance if you leave the US.

https://danboater.org/membership.html

Good luck from a doctor with cardiac disease who is about to cross the Pacific the hard way...west to east.
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Old 15-01-2018, 16:03   #6
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Re: A hiccup in our plans - congestive heart failure

I don't know about congestive heart failure, but there's lots of us out sailing who have had heart attacks. Like say, for me who had one at 54.

But far as sailing, why would not do that if you are going to do much more dangerous things, like ............................... drive a car?
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Old 15-01-2018, 16:38   #7
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A hiccup in our plans - congestive heart failure

At 52, I had a major heart attack. It left me with an Ejection Fraction of around 35. It deteriorated for another year or two with a collapsed bypass and stents to open it back up. My EF got down to between 15-20 with congestive heart failure and I got a defibrillator. I thought I was a goner. I made final plans. At a routine checkup with my Internist, I told him I needed a magic bullet. He kind of smiled and said he might have one. I started taking an over the counter, $40 per month drug and in 3 months my EF went from 15-20 to 30-35. That was in 2002. Also, that is on top of the 9 other drugs I take daily.

I bought a new Hunter 356 in March of 2003, equipped it to go to Florida with State of the art electronics for 2003 and spent way more than most would conceive spending on a boat of this size. I have limits. My Cardiologists says I am an 8 cylinder engine operating on 4, so I have to pace myself. Well here is my sailing pace. My wife and I have stayed on Persistence 1072 days in the past 15 seasons. We have sailed/cruised locally and to SW Florida and back 7973/9223 NM/SM. We have anchored 305 times with an electric windlass, docked 605 times and night sailed/cruised 661 hours. I winch my air floor dinghy off the foredeck with my spinnaker halyard and use my Ocean Marine crane to drop my Lehr 5 HP outboard onto my dinghy -sometimes without my wife’s help. We did a 36 hour and a 50 Hour Gulf Crossing on our Florida trip. I just do all these things Slowly! I’m an Architect and my Architect son is running my company founded in 1976, but I still work 30 to 40 hours a week in a highly stressful environment.

I don’t leave the US. I have Medjet that will fly me back to my great Doctors at St. Thomas Hospital in Nashville. (I see 3 on a very regular schedule). We did make one trip for a week to the Caymans to stay with friends, but MedJet could have gotten me from there, and my friend/college roommate and frat brother is a Doctor, so I felt relatively safe.

I can’t stress to you how important it is to see your Doctors regularly and DO WHAT THEY TELL YOU!!! You can recover from your condition and lead a normal life with limited restrictions, but it’s up to you. Let them straighten you out and get you stable, then go out and do your plans - modified to fit your new condition.

I’ll be 71 in May. I think I can go another 15 years sailing, then I might think about selling my boat. But then again, I might can go longer. Keep a positive but realistic attitude and live wiithin your limits. Life ain’t over for you, it’s just a new beginning!
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Old 15-01-2018, 17:00   #8
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Re: A hiccup in our plans - congestive heart failure

All great advice.
Take care of yourself(see doctor, right treatment, lose weight, slowly get in shape)
Realistic sailing conditions and location (Limited crossings, Access to ER)
But lots of potential sailing even if limited to continental USA
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Old 16-01-2018, 08:39   #9
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Re: A hiccup in our plans - congestive heart failure

Quote:
Originally Posted by Cthoops View Post
I'd love to hear from anyone who is (or knows someone) sailing and/or cruising (coastal or offshore) with congestive heart failure.

Our plans to cut the dock lines on August 4th are now delayed for a bit due to a new congestive heart failure diagnosis for Mr. cthoops. He's 58 years old and was diagnosed with atrial fibrillation approximately seven years ago, but it didn't really bother him. The doctors aren't sure if the damage was caused by a long-running undetected afib or if something else like a virus caused the damage which triggered the most recent afib. Doesn't really matter at the moment.

We already know that even after things settle down the longest interval between cardiology appointments will be three months, so we are adjusting our plans accordingly. His doctors have already said that the next one to two years will be very important so we aren't going to leave before then, but in the meantime it would be nice to connect with anyone experiencing the same situation. PM is fine if you would prefer.

Thank you.
All of us have some sort of congestive heart failure (living is, indeed a part of dying). No joke, I turn 70 in two months have survived 3 non related cancer (one stage four and not expected to live), a silent heart attack about 3 to five years ago and a quadruple by-pass. I am an avid sailor and live aboard (right now I bailer the cold weather and went South to stay in my RV for the winter - first time Snowbirding). My wife, also in her 70's is recovering from a mastectomy and required to see her doctors every 6 months which also bites in to our time. We are planning to finish boat repair and maintenance in spring (DIY) in order to leave on a 6600 mile trip over America's great Loop. We may do the Caribbean while we are at it. Heart health and health in general are mostly a frame of mind. As Morgan Freeman said in character (Red in the Shawshank Redemtion) "Get busy living or get busy dying". I'll add to that that none of us will make it out alive anyway so enjoy it while your can. I will close by suggesting you get your here after in order also as you, too, already have one foot in the grave.
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Old 16-01-2018, 11:43   #10
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Re: A hiccup in our plans - congestive heart failure

Doc, what a great recap of what to do when you have congestive heart failure. Do not let it stop you. My wife and I sailed a lot as my injection fraction went from 55% to 19% in the last 20 years due to a viral attack on my heart and am on the heart transplant list at the university of Washington. It did not keep me from teaching snow skiing also till a year ago. Good luck.
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Old 16-01-2018, 12:46   #11
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Re: A hiccup in our plans - congestive heart failure

As with many things, it all depends. Follow the advice of your cardiologist, but be aware different physicians may have differing views. Find one you trust and that understands your particular situation and desired lifestyle.
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Old 16-01-2018, 13:36   #12
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Re: A hiccup in our plans - congestive heart failure

A lot of good info presented. As a 33 year Cardiac nurse here, I would add a few things.
Have on board a good supply of lasix. I would suggest IV, but then your wife would have to be able to start one.
Have a good supply of Potassium. Lasix will strip potassium from your blood stream. This will case a unsafe condition for him, and cardiac arrhythmias can develop.
Have a supply of nitro tablets. Not just one bottle, several. Check dates. They will go bad fast once opened.
A bottle of oxygen onboard and a face mask for a acute exacerbation.
A CPAP machine might be helpful. Talk to your doctor about that.
A portable AED. Yeah its expensive. Whats your life worth?
If you get one, wife has to learn how to use it, not hard.
https://www.amazon.com/Philips-Medic.../dp/B00064CED6
Don't cruise far. Stay Within the US if your EF is <30%.
Manage your symptoms. Stress reduction. Yoga, mediation.
Give up meat, go vegetarian. Stay below 2gms of sodium per day. Don't add salt to any food. Learn to like food as it tastes. Stay away from prepackaged foods and restaurants.
Keep your feet elevated when ever you can.
If you get sick seek medical attention fast. Stay away from crowds. If you must go where there are a lot of people, wear a surgical mask.
Make sure you have some quick clot onboard in your medical kit. Get several, including one for nose bleeds, especially if your own blood thinners.
Dont over do it. Get adequate sleep. Don't fight the helm, or the sheets. Try to stay out of stressful situations if you can. If you get into one, relax.
Remember none of us will live forever. s*** happens. We die. If being on a boat is to stressful for you, then stay home. But if its what you want to do, go for it. In the end you got to do what is comfortable for YOU.
Hope this helps. I tried to give you some practical suggestions of what I would do if I were in your shoes. I would go unless I got short of breath just dressing.
Fair winds,
Bob
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Old 16-01-2018, 14:26   #13
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Re: A hiccup in our plans - congestive heart failure

Quote:
Originally Posted by JPA Cate View Post
If you can, find a cardiologist who is also an enthusiastic sailor. It is that someone who loves to sail will hear you guys' desires and plans with clearer ears than most land lubbers. You can use this person as your 2nd opinion doc, and really pay attention.

Good luck and good health to both of you.

Ann
Thanks, Ann. Fortunately his electrocardiologist is a sailor, so that helps.

Quote:
Originally Posted by DockDoc View Post
Important things to know are,

How was he diagnosed? Did he have an echo cardiogram, cardiology evaluation, and clinical+xray+ lab findings consistent with CHF?

He spent a week in the CICU and another week in the CHF unit - two echocardiograms, several x-rays, a cardiac MRI, cardiac angiogram, etc. Thank goodness for excellent health insurance.

What is his Ejection fraction? EF is at 30% right now, but that's up from his first echocardiogram. Losing almost 20 pounds of fluid undoubtedly helped. He's still in afib (two cardioversions didn't help), but a third cardioversion is scheduled for next month. We'll see what comes next if that doesn't work. Hoping his EF will increase if his afib can resolve, but at least the medications are keeping the range lower anyway.

How is his health otherwise? Other comorbidities, diabetes, aortic stenosis, obesity, renal insufficiency, emphysema all can impact the CHF.
Otherwise his health is good - no diabetes, not overweight. Reformed smoker, and of course he drank - we're sailors after all! The whole thing came as quite a shock. He was on coumadin for years due to a prior DVT/PE, but they switched him to Elliquis in the hospital since coumadin will be more of a challenge with all of the other meds.

I tell my patients "the only person who should know more about your condition then me, is you!" Be specific about the plans you have. Ask until you have the answers you need.

I like that philosophy - thank you for your comments!

Quote:
Originally Posted by s/v Moondancer View Post
As DockDoc writes, the ejection fraction will probably be the deciding factor. I have a friend who continues to cruise the Caribbean with AF and decreased EF. However, he stays close to first world medicine and no longer does trips over 3 days.

Cruising the US coast, the Keys and Bahamas should not be a problem with moderate disease but you do need repatriation insurance if you leave the US.

https://danboater.org/membership.html

Good luck from a doctor with cardiac disease who is about to cross the Pacific the hard way...west to east.
Good to hear about your friend - and you! At this point we're looking at the Keys, Bahamas - really no further than the BVI's depending on how things develop.

Quote:
Originally Posted by J Clark H356 View Post
At 52, I had a major heart attack. It left me with an Ejection Fraction of around 35. It deteriorated for another year or two with a collapsed bypass and stents to open it back up. My EF got down to between 15-20 with congestive heart failure and I got a defibrillator. I thought I was a goner. I made final plans. At a routine checkup with my Internist, I told him I needed a magic bullet. He kind of smiled and said he might have one. I started taking an over the counter, $40 per month drug and in 3 months my EF went from 15-20 to 30-35. That was in 2002. Also, that is on top of the 9 other drugs I take daily.

I bought a new Hunter 356 in March of 2003, equipped it to go to Florida with State of the art electronics for 2003 and spent way more than most would conceive spending on a boat of this size. I have limits. My Cardiologists says I am an 8 cylinder engine operating on 4, so I have to pace myself. Well here is my sailing pace. My wife and I have stayed on Persistence 1072 days in the past 15 seasons. We have sailed/cruised locally and to SW Florida and back 7973/9223 NM/SM. We have anchored 305 times with an electric windlass, docked 605 times and night sailed/cruised 661 hours. I winch my air floor dinghy off the foredeck with my spinnaker halyard and use my Ocean Marine crane to drop my Lehr 5 HP outboard onto my dinghy -sometimes without my wife’s help. We did a 36 hour and a 50 Hour Gulf Crossing on our Florida trip. I just do all these things Slowly! I’m an Architect and my Architect son is running my company founded in 1976, but I still work 30 to 40 hours a week in a highly stressful environment.

I don’t leave the US. I have Medjet that will fly me back to my great Doctors at St. Thomas Hospital in Nashville. (I see 3 on a very regular schedule). We did make one trip for a week to the Caymans to stay with friends, but MedJet could have gotten me from there, and my friend/college roommate and frat brother is a Doctor, so I felt relatively safe.

I can’t stress to you how important it is to see your Doctors regularly and DO WHAT THEY TELL YOU!!! You can recover from your condition and lead a normal life with limited restrictions, but it’s up to you. Let them straighten you out and get you stable, then go out and do your plans - modified to fit your new condition.

I’ll be 71 in May. I think I can go another 15 years sailing, then I might think about selling my boat. But then again, I might can go longer. Keep a positive but realistic attitude and live wiithin your limits. Life ain’t over for you, it’s just a new beginning!
Thanks so much for sharing. It's great to read about all that you and your wife have done.

Quote:
Originally Posted by Puget Dan View Post
Doc, what a great recap of what to do when you have congestive heart failure. Do not let it stop you. My wife and I sailed a lot as my injection fraction went from 55% to 19% in the last 20 years due to a viral attack on my heart and am on the heart transplant list at the university of Washington. It did not keep me from teaching snow skiing also till a year ago. Good luck.
I'm glad to read about how much sailing and skiing you've been able to do. Best of luck to you, Puget Dan.


Thanks to everyone for the comments and the encouragement. We'll see how things develop over the next one to two years, but in the immediate future we're looking forward to splashing in the spring and getting back to long weekends on the boat. It's our happy place!
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Old 16-01-2018, 15:23   #14
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Re: A hiccup in our plans - congestive heart failure

An interesting thread. I could tell a loooong story about this subject but I will try to refine it to the essentials (hard for me to do). A few years back, maybe 25 +/- I was being treated for high bp with a drug that eventually made me swell up like a toad and the dr diagnosed me with congestive heart failure. After that dustup died down and I was on other meds, the prob went away. Fast forward a few years and 2 or 3 other cardiologists to one who said my afib wasn't responding well to drugs and I needed a pacemaker, to which I said b.s. and went for a 2nd opinion which led to thoractoscopic surgery to correct the afib. Mostly. Couple of years later was the rf ablation that cured it for good. No probs in past 4 years. Point I'm trying to make is that a good patient is one who follows his doctor's instructions to his deathbed. You want to place your life in someone else's hands, go for it but I cannot. Yes, I realize they are the ones with the training but they are human and fallible and my body is ultimately my responsibility, so when I am told my condition I learn as much as I can about it and respond accordingly. So far it's worked out well for me. Your mileage may vary and probably will.

Good luck and happy cruising.
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Old 16-01-2018, 16:06   #15
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Re: A hiccup in our plans - congestive heart failure

Quote:
Originally Posted by trifan View Post
An interesting thread. I could tell a loooong story about this subject but I will try to refine it to the essentials (hard for me to do). A few years back, maybe 25 +/- I was being treated for high bp with a drug that eventually made me swell up like a toad and the dr diagnosed me with congestive heart failure. After that dustup died down and I was on other meds, the prob went away. Fast forward a few years and 2 or 3 other cardiologists to one who said my afib wasn't responding well to drugs and I needed a pacemaker, to which I said b.s. and went for a 2nd opinion which led to thoractoscopic surgery to correct the afib. Mostly. Couple of years later was the rf ablation that cured it for good. No probs in past 4 years. Point I'm trying to make is that a good patient is one who follows his doctor's instructions to his deathbed. You want to place your life in someone else's hands, go for it but I cannot. Yes, I realize they are the ones with the training but they are human and fallible and my body is ultimately my responsibility, so when I am told my condition I learn as much as I can about it and respond accordingly. So far it's worked out well for me. Your mileage may vary and probably will.

Good luck and happy cruising.
Trifan, I can't begin to tell you how many crappy docs I have worked with over the years. Even the good ones may no, or will not try to understand someones situation. As you say, its your body. Medicine is not a exact science either. Is both science and a art. And like anything,you mileage may vary. Its incredible what they don't teach in med or nursing school about diet and disease. But there a a lot of good ones out there. But even if you have one of those, its still your body. You only get one. Treat it well.
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