Mended Hearts Open Forum

Expand all | Collapse all

CHF

  • 1.  CHF

    Posted 05-12-2021 17:00
    Got a question for the CHF group.

    Apparently I waited to long to have my aortic valve replacement and suffer from CHF, overworked my heart.

    The question is fluid retention. How do you determine your baseline weight.  Keep in mind im an analytical person.

    So I take lasixs and metazalone when needed. It drives my weight down to 204-206. How low do I want to go and is considered baseline. Most of my adult life has been 230-250. I don't feel the effects of excess fluid until I reach 215 or so. Being new to this I'm not sure what my goals are.

    ------------------------------
    Martin Shannon
    Owner
    MCS LABS
    Summerville SC
    8434195266
    ------------------------------


  • 2.  RE: CHF

    Posted 16 days ago

    Martin, you are asking a very good question.  I'm not a medical professional and I don't have a definitive answer for you, but let me tell you what I went through to arrive at the point where I did have a baseline number.  I have CHF as a result of a bad heart attack.  I was 61 at the time (am now 66) and I was at the low end of BMI-defined obesity.  I'm 5'9" and weighed 235 at the time of my heart attack.  I was traveling in another state on business when it happened so the cardiologists who saved me did not become my permanent care team.  I was in the ICU for a week and when I left the hospital to fly home, my EF was 25%-30%.  I had almost died and the heart attack scared the living hell out of me, so as soon as I got home, I started following the Ornish diet to the letter, and my weight started dropping almost immediately.  I was losing 8-10 lbs. per month steadily.  Now, during this time, I was also putting together my cardiac team in Raleigh, NC, where I live.  My focus was on the heart attack and the stent, and I wasn't really focused on the fact that I also now had heart failure, and the heart failure aspect of my condition wasn't really being addressed yet. My new cardiology team in Raleigh at this point consisted of an interventional cardiologist and an electrophysiologist.  I was told that I had heart failure, but the focus was really on getting the meds right for my post-heart attack needs.  I was effortlessly losing weight, and this was documented in each of my several visits to the cardiologist in the first couple of months post-heart attack. I also charted my weight every day, and I still do to this day. So, because I was losing weight, the fluid retention aspect of CHF was not a concern at this point, and therefore, I was not put on a diuretic.  3 months after my heart attack.....and at this point, I had lost around 25 lbs,  I woke up one morning and was feeling a tightness in my chest and shortness of breath,  and I went to the ER to be on the safe side.  They quickly determined that I was not having another heart attack, but rather, I had a pleural effusion.....fluid buildup surrounding my lungs.  The pleura is a sack that surrounds your lungs, and the space within that sack was approximately half-filled with fluid.  The fluid was pressing on my lungs, preventing them from fully expanding, thereby causing my shortness of breath.  This was an acute heart failure episode, and I was in the hospital for 3 days as they used intravenous Lasix to remove this fluid. I lost about 10 lbs of fluid during this hospital stay.  I was immediately prescribed a lasix pill that I was now to take daily as part of my heart-meds regimen. The weight I was at when I was discharged from the hospital was my new baseline weight. At this point, my interventional cardiologist felt I needed to have more care focussed on my heart failure and I was referred to the heart failure clinic at my hospital.  So now, I have my interventional cardiologist, my electrophysiologist, and my CHF specialist.  I continued to lose weight, and finally reached 180 lbs, which was a 55-pound weight loss from the time when I had my heart attack.  I've bounced up and down between 180 and 190 for the past 5 years. I weigh myself twice a day and log it in my daily heart log.  I take my oxygen saturation and heart rate twice a day, my BP twice a day, and weigh myself twice a day. I weigh myself in the evening because it is indicative of what I will weigh the next morning. Once I got the heart failure specialist, I was told to call them if my weight increased 3lbs or more overnight or 5 lbs or more in a 5 day period.  They would instruct me on taking additional Lasix pills, usually for a period of a few days, to bleed off that extra fluid.  Once my weight returned to the point it was before the sudden weight increase, I'd go back to my regular dose. This sudden weight gain would happen every few months.  After going through this routine of talking to the heart failure clinic, I was told that I could now self-medicate if I had a sudden weight gain and that I should call the clinic if I was not able to bleed off the fluid.  After about 3 years, Lasix started losing its consistent efficacy for me and I was changed to Torsemide, with has worked well consistently,  

    I'm very careful about my sodium intake with my diet.  I religiously adhere to the <1500 mg sodium consumption limit recommended for CHF patients, and I am closer to 1000 mg than 1500 mg on a daily basis.  If I go out to a restaurant (all restaurant food is LOADED with sodium), I make the best choices I can to reduce my salt intake and I may take a Torsemide pill when I get home if I can tell that I consumed too much salt.  This is very important.  If you are not paying attention to your sodium intake, you really need to.  It makes a big difference. I'm a lousy cook, but I've had to learn, and I make all my food from scratch now. I look at all labels for sodium content (bread, for example....go with Ezekiel no-sodium bread).  

    So, in your question, you say " I take Lasix and Metolazone when needed. It drives my weight down to 204-206".  The fact that you say "when needed" indicates to me that you only take diuretics when needed and you are not taking a diuretic on a daily basis.  So, please clarify, are you taking a diuretic on a daily basis? If you are not, you should definitely ask your cardiologist about that.  Again, I am not a doctor, but what I have been told by my heart failure clinic is that the core, standard daily medications for CHF patients are a beta-blocker, an ACE inhibitor, and a loop diuretic.  Lasix is a loop diuretic.  Torsemide is a loop diuretic. Metolazone is a thiazide diuretic and I believe it is given to supplement the loop diuretic if the loop diuretic is not as effective as it should be.  If you are not being treated by a heart failure clinic, I would definitely ask your cardiology team to refer you to one.  I see you live in Spartanburg, and there will definitely be heart failure clinics in Spartanburg. My heart failure clinic is now my first point of contact.  My cardiovascular disease that caused my heart attack is well under control.  My ongoing biggest issue is my heart failure, so my heart failure clinic is now really my primary cardiologist. 

    As far as your baseline weight, if when you take your diuretic, your weight is driven down to "204-206", I would use 205 as your baseline number. Unless you are taking an excessive amount to drive off fluid, you should not be dehydrated at that weight. I'd use that as your baseline.

    When you take your diuretics, how much Lasix do you take?  How do you determine how much to take?  Have you been given instructions by your cardiologist?  It just seems to me that you should be taking a loop diuretic on a daily basis.  That's pretty much standard operating procedure for CHF patients, and if your cardiologist who treats your heart failure has not prescribed Lasix on a daily basis, you need to ask them why not?



    ------------------------------
    JAMES GOODMAN
    RALEIGH
    ------------------------------



  • 3.  RE: CHF

    Posted 16 days ago
    Hi James

    I am taking Lasix 20mg. once daily post open heart surgery and for the most part seems to work.  My question: is there any drawback to taking another dose if a little too much sodium consumed that day? Thanks.

    ------------------------------
    Lisa Johnson
    Registered nurse
    CA
    ------------------------------



  • 4.  RE: CHF

    Posted 16 days ago
    Hello there Martin, I have CHF and my cardiologist to me to watch your weight that you are right now.  If you weigh 205 your weight should not fluctuate from three to five pounds, so if you weigh yourself ever morning it should not exceed five pound cause the doctor said it's not good your retaining fluid, and there is were your laxis come in to help you regulate you weigh and fluid your body is holding on to, but I would ask your cardiologist to help you get that number for you cause everyone is different. Good luck

    Charles Mazur 
    The Woodlands 

    Sent from my iPhone





  • 5.  RE: CHF

    Posted 16 days ago
    Martin, 

    If you are finding that Lasix is not working consistently for you, ask your cardiologist about a different diuretic.  Lasix lost its effectiveness for me and I was switched to Torsemide, which has been far more effective for me than Lasix.  Good luck.

    Jim Goodman







  • 6.  RE: CHF

    Posted 16 days ago
    I take one 40mg lasix on a daily basis. I was instructed to take as many as 3 if the urine output wasn't sufficient.

    I weigh myself daily and record the weight. Was told 6 lbs in 2 days was to much fluid.

    The metazalone is an adjunct med to help drive off excess fluid.

    I do see a heart clinic.





  • 7.  RE: CHF

    Posted 16 days ago
    Martin, are you following a low-sodium diet.....less than 1500mg per day?


    Jim Goodman







  • 8.  RE: CHF

    Posted 16 days ago
    Lisa,

    I have had a number of discussions about diuretics with my heart failure specialist at my heart failure clinic.  What I am going to tell you now is what I was told by that cardiologist but you must bear in mind that his answers applied to me and my particular condition, and you must get definitive answers from your cardiologist who knows your particular condition.  

    OK.....some context....so, I have systolic heart failure and dilated cardiomyopathy as a result of a 100% blockage of my LAD.  I live in Raleigh, NC.  I was traveling in rural Alabama while on a business trip when it happened and there was a 21-hour delay before I got into a cath lab and I have a lot of damage to my heart as a result of that delay.  This happened in April of 2016, so it's been a little over 5 years since the heart attack.  I was put on 20mg of Lasix, just like you.  I was put on the Lasix by my new interventional cardiologist, who took me on when I returned from the hospital in Alabama. I also got an EP, because I was being assessed for a possible ICD implant because of my low ejection fraction, 30%, which made me vulnerable to SCA. But at this point, I was not a patient of the heart failure clinic that is part of my hospital and a branch of the large cardiology practice that cares for me.  4 months later, I ended up in the hospital with an acute heart failure episode and a pleural effusion. At this point, my interventional cardiologist referred me to the heart failure clinic and I got a heart failure specialist.  I have absolutely outstanding care from my cardiology team and my heart failure clinic has been the key to holding my CHF in check.  I have not been hospitalized for acute heart failure since that one incident.  

    Heart failure specialists are experts in the management of heart failure.  In that regard, they are in a different league above your regular cardiologist.  My heart failure specialist gave a talk at our local Mended Hearts meeting and in that presentation, he explained that the heart failure clinic approaches CHF in a way similar to the approach that an oncology team might manage a cancer patient.  The CHF is not going to be cured, but they work to keep it in remission. This is most successful with a compliant patient who makes the diet and lifestyle changes necessary to possibly delay the worsening of their CHF.  

    One of the most powerful tools available to the heart failure specialist is the drug selection now available for CHF and they are experts in determining the right combination of drugs for each unique patient, that will result in the best outcome.  My heart failure clinic, for example, has its own pharmacist whose focussed expertise is CHF.  He works hand in hand with the heart failure specialists to determine the right combination of drugs for each patient. The drugs prescribed must balance the needed efficacy to combat CHF with the patient's other health conditions that the CHF drugs might possibly worsen.  I was told that the 3 types of drugs that are considered the standard starting point for systolic CHF treatment are (1), a beta-blocker, (2), an ACE inhibitor, and (3), a loop diuretic.  There are all sorts of adjusting and adding of new drugs that may take place over a period of months to years as your drug regimen is dialed in by your cardiology team. With CHF, the drugs prescribed can cause damage to other organ systems, so regular monitoring with blood tests is very important.  I have  CBC and full metabolic panels every 6 months, minimum.  Heart failure drugs can be hard on your kidneys and liver, and you can be taking several drugs, each of which, by themselves, can be harmful to those organ systems, let alone several of them. 

    So, with regard to your question about taking more than one 20 mg tablet of Lasix, the cardiologist managing your heart failure would be the one to ask that question.  Your cardiologist needs to consider any underlying conditions you have that may be worsened by increasing your dosage. Despite my EF of only 30%, I am largely asymptomatic with my CHF.  My kidney and liver functions are still normal and have not degraded. But after 4 years, Lasix was losing its efficacy for me.  In my 3rd year on Lasix, I was having to double up my Lasix (40 mg) more and more often.  I was able to do this because my kidney function was not failing. This is one of the problems for CHF patients.; diuretic resistance.  The loop diuretics can start losing their functionality.  So, my heart failure specialist put me on Torsemide.  Torsemide has better bioavailability than Lasix. Bioavailability is the proportion of a drug, which enters the bloodstream when introduced into the body and so is able to have an active effect.  We'll see how long Torsemide works well for me until it maybe starts to lose efficacy.  At that point, my dose will likely be bumped up.  But 1-1/2 years after the switch, it is still very effective. And there are other diuretics that are more powerful which I could conceivably be put on if I max out Torsemide in the future. 

    The goal is to slow the inevitable advance of CHF.  There are people in my cardiac maintenance program at my hospital's wellness center who have been living with CHF for 40 years. I want to tell you something my heart failure specialist told me at my last appointment that I think is very important. Background;  I was put on Entresto in January of 2020.  I was and still am on the minimum dose.  My most recent Pro-BNP blood test,  back in January of 2021, came back with a reading of 300, the best it has ever been since my heart attack 5 years ago.  At its worst, my Pro-BNP was 3500  My most recent nuclear stress test showed my dilated cardiomyopathy has improved, and my heart is now back to normal size.  Yet despite Entresto's reputation for increasing ejection fraction, my ejection fraction remained at only 30%.  Well, the clinical trials for Entresto showed that the higher the dose, the bigger the reduction in mortality.  I asked my heart failure specialist, would he be putting me on the next higher dose of Entresto, working up to the maximum dose?  And this is what he said....and this holds for the diuretics and beta-blockers as well.  He said that he wants to hold the higher doses for all those drugs in reserve to be able to use them in the future if my stable condition starts to worsen.  If I were prescribed the higher doses now and I developed a tolerance to them, it would reduce the pharmaceutical options available that might prolong my life. This is where the lifestyle and diet changes come into play.  For example, by following a very low sodium diet, I put less load on my kidneys, and they have been able to withstand the reduced oxygen supply caused by my CHF.  So I can get by on smaller doses of my diuretic and thereby, larger doses can be held in reserve for the future if needed.  I drink very rarely, so I reduce the load on my liver, which is also underserved by my weakened heart.  So far, my liver function remains normal.  So it's a delicate balancing act between meds, diet, weight, and exercise, and the outcome, hopefully, is keeping CHF in "remission".







  • 9.  RE: CHF

    Posted 16 days ago
    Sorry Martin, I see you are in Summerville, not Spartanburg.  Charleston will have heart failure clinics for sure.

    ------------------------------
    JAMES GOODMAN
    RALEIGH
    ------------------------------



  • 10.  RE: CHF

    Posted 16 days ago
    Hi Martin

    Question: When you do take the lassie,how much do you take,for how long and how much fluid do you lose? Do you change your diet in any significant way while doing that? Your goals should be about feeling your best and have lab work that indicates good numbers!

    ------------------------------
    Lisa Johnson
    Registered nurse
    CA
    ------------------------------



  • 11.  RE: CHF

    Posted 16 days ago
    The lasix are 40mg tabs, I start out with 1 then add one if needed later in the day. If my urine output is subpar ill take a 3rd in the early evening.

    Diet doesn't change much. Ill take at least 1 lasix every day and weigh myself every morning.

    At 206-207 lbs i will acquire a dehydration headache, 210 -212 seems to be ok.

    Exercise is the key to everything. Getting my heart rate up for a period of time during the day helps reduce the edema