[azark]

I'm having problems determining the amount of lasix I need to take and am open to suggestions and experiences of other CHF'ers.

Briefly, I was diagnosed CHF a year ago (EF 20%) with left bundle branch block and some mitral valve leakage. Arteries clear, BP not elevated. Meds treatment with Coreg, Lisinopril, lasix, etc did not help in 4 months, so had bi-ventricular pacemaker implanted. This helped a great deal, but still not like it used to be. I'd estimate my EF at around 25-30%, it has not been checked since implant.

At time of implant in mid-May of last year, I was taking about 120 mg/day of lasix to maintain that seemingly fine line of fluid retention vs. too dry. Within a week of the implant, I reduced it to 80 mg as the pacemaker seemed to be doing its job of sending the signal to the left side of the heart. By late July, I discovered that 80 mg was way too much for me and eventually in August reduced it to zero! This was fine for 2-3 months until colder weather set in and at that time, it was apparent I needed the lasix again (hard time breathing at times).

I just got done finding out last week that at 80 mg I was overdosing and drying out too much again. Doc and I decided that probably correct (for now) is in neighborhood of 40-60 mg Trial and error.

My problem is determining when I'm too wet or too dry. It seems like a narrow range. Too wet and I know the symptoms are hard to breath. But I had "hard to breath" symptoms when I was extremely dry last week too! I do not and never had any swelling of legs or feet -- only on the "other side" of the heart: the lungs with fluid as originally diagnosed. Too dry yields dizziness when standing up from sitting position, and in me, extremely dry mouth at times; and also as mentioned, shortness of breath; and generally feeling lousy probably due to low BP (85/45).

My doctor, from his experience, has told me to watch my intake of fluids, and to go easy on salt. He subscribes to the theory that it is quite difficult for an average old timer like me to change my eating habits, so as long as I don't add salt at the dinner table and watch my fluid intake, I'll be OK.

From what I've read, I'm not 100% certain of this advice about limiting fluid intake. Comments?

My question is: has anyone else in a similar situation had the problem of finding the correct amount of lasix to take? And if so, did they solve the problem? And if you are in a climate of good seasonal temperature variations, did this affect your lasix usage?

[eatkinson]

It has been a very difficult balancing act with lasix for my mom, also! She has the same diagnosis as you. Her EF was 25% three months ago when she had her Bi-V pacer/ICD implanted. Unfortunately, it is now 15%. It does not seem to be helping. She has seen 2 different cardiologists and one says to limit fluids and the other says to "hydrate...you're too dry!" She rarely gets ankle edema (and then it's slight) and also feels short of breath when she's "dry". She can only tolerate 40mg of Lasix at most. (80 mg is a fairly high dose of Lasix, long-term). Often her lungs are clear when she has a CHF exacerbation, so I really don't understand either, and I think the doctor's struggle with her also. She can't tolerate a regular dose of beta-blocker and no ace inhibitor because her blood pressure gets too low and she is a fall-risk. She's only 74 but has been in the hospital 5 times in the last year and a half. You are not alone with the Lasix issue. I work for one of her cardiologists, and I even can't get a real clear answer sometimes. I am taking her for "echo optomization" for her Bi-V pacer and our electrophysiologist says it may help a bit. I wish you the best, but sometimes the answer is really not clear-cut, as you know. I'm glad your Bi-V is working for you. It's amazing technology. Hang in there.

[azark]

Thanks for the info on your 74 year old mother. I am 73. Since my original query posting last January, things settled down to 20 mg lasix daily which seemed to work fine until the hot summer weather settled in and even though I stay inside an air-conditioned house most of the time, I found out by mid July that I was overdosing on 20 mg lasix, so with doc's blessing, discontinued it for present time. I'll probably go back to 20 mg in late fall or when I detect I need to.

My local personal physician (MD) passed away at the end of July so I'm being watched and advised by his ANP (Advanced Nurse Practitioner) who had been with him for years and learned his practical methods. On my last visit with him, he had advised using the ANP as she had attended most of the training and seminars that he had participated in in recent years. I will eventually need to find another area doctor I might have faith in. (I live in a rather rural area of the Arkansas Ozarks with the larger cities of Little Rock, Fayetteville, or Springfield(MO) all being about 2-1/2 hour drive.)

The excessive lasix (dryness) along with all the other RXs (Coreg, Lisinopril, Spironolactone) was causing too low blood pressure. Often it was in the 82/44 range -- and believe me, one feels quite lousy/yucky when it gets that low. All I wanted to do was to sit, watch TV, sleep, eat, and exist. Since dropping the lasix again, I've been feeling quite well for weeks -- even though I still tire easily with little exertion. BP is typically now 110/70. My Lisinopril was also cut back a little in the process too.

I'm quite surprised that no other replies to my original message/concern have been forthcoming in over 7 months. Is my sensitivity to lasix/dryness rare?

I surely hope your mother can find some combination that will give her a better quality of life. Thanks for the message reply.

[eatkinson]

An interesting twist to the diuretic issue today...Mom had a friend call 911 yesterday because she couldn't stand up/sit up, etc. The doctor at the hospital told me it was her CHF and dehydration. I knew she was taking too much Lasix! Well, today she was having shortness of breath in the hospital, so what do they do?? They gave her IV Lasix!! (even though her lungs were clear and her chest X ray looked good). brilliant! She went into shock and they had to rush her to the ICU. After about 4 hours of a Dopamine drip, her BP was readable. Sometimes I really wonder what they're thinking. They told me they think the Lasix pushed her over the edge. She was stable when I left her an hour ago, but I thought "here we go again". More proof what a delicate balance it is! I'm glad you have a PA you can trust. Best of luck.

[azark]

Wow! What a scary story regarding almost killing your mom with lasix IV! Quite some time ago, in a discussion with my doc, the topic of emergency room care came up (in response to my question on how low my BP could go before I need to seek emergency help) -- he said that if I came into the ER with BP of xx/42, they would probably panic and do the wrong thing. I'm beginning to think I should carry a card on me which instructs them exactly what and what not to do (not that it would be followed).

Incidentally, in response to my question on how low my BP could go -- his sage advice was it all depends on how I feel. As long as I didn't feel too dizzy when getting up or fainting, it would still be in the acceptable range.

I'm still feeling pretty good without the lasix (although I guess that spironolactone that I still take does the diuretic deed, although I don't really notice it).

I wish your mom well. This is not fun.

[eatkinson]

Not fun indeed. Mom passed away on Thursday. Her heart just couldn't rebound one more time. Your doctor is correct in telling you to judge when your pressure is too low by how you feel. I always tell my patients that. For instance, my BP is normally 90/54 or so, but I am fine on that. Some others may get lightheaded. It looks like Mom got tired of trying to keep hers above 70 systolic. She should have been tired, she fought too hard for too long. Please take care of yourself and I wish you the best.

[DixVal]

This is my first post here & my first CHF forum. I, when I had cancer, joined a BC site & found it quite useful. My husband, CHF patient, & I just discussed his Lassix dose this morning. He does not drink & never smoked. Was a bike rider. (Still is but now a motorcycle) He will be 77 in February & has been plagued all year with health problems. The last being diagnosed with CHF. I found it interesting that you need more Lassix in the cold. We are having temps in the 20s & his worst night yet was Christmas after going out to his brother's for dinner. He over ate & I found out last night that he'd forgotten his morning pills, took them very late so skipped his evening pills. Therefore he took NO lassix because he only takes it at night. His feet are very cold & swollen today so I had him take 40mg of lassix this AM & get back on schedule tonight. As for the wet/dry. His cardiologist told him to never intake more than he outputs. He uses a urinal always & has it marked very well as to oz. That seems to help a lot. There are several other meds that could help him but because of past kidney problems (Went into renal failure due to a clot. He had a 50-50 chance of losing his leg. Did a femoral popliteal bypass, fasciotomy, skin graft yada yada yada.) they are afraid to give them to him. He's on Lassix, Plavix, Coreg, Potassium, Lisinopril, & Allopurinol. He also takes Iron, low dose aspirin & a 1-A-Day. This was a sudden onset of symptoms. Just as he was recovering from the February surgeries. In August they did a right heart cath followed by an update (2 lead to 3 lead) ICD. We are pumping Milrinone 24/7 at a pretty fast clip. At one point the ICD seemed to pick up some slack & they lowered the dosage. The next time lowered he got really bad & is now, just short of 5 months later, above the original dose. I hope the wet/dry suggestion works to help you adjust the Lassix. Take care, V

[azark]

Hi DixVal and thanks for the reply. Our prayers are with you and your husband for improvement in his health. I thought that it might be time to update my status too. My previous post was still in the summertime. In mid-October we started having unusually cool (cold?) fall weather and I started back on the small 20 mg. dosage of lasix. Within a month, I felt it was too much from past experience with symptoms and cut it out around mid-November. I was feeling so lousy so much of the time; after cutting it out, the past 1-1/2 months I have felt better than I have in the two years I've had CHF. I still am not what I was previous to the onset of CHF two years ago, but most of the time I'm feeling good and lack many of my previous CHF symptoms. I'm still on 25mg/day Coreg, 25mg of Spironolactone, and down to only 5 mg Lisinopril. But I have been taking several other over the counter (OTC) meds such as CoQ10 (Ubiquinol) and others as has been suggested by Dr. Blaylock in his monthly Wellness Report newsletter. I've done this only after some pretty thorough personal research, and I would suggest anyone reading this do the same personal research due to the large number of snake oil peddlers out there. For the past two years (2 year anniversary was on Christmas eve), I have partly gaged my well-being by what I call the "Wal-Mart Test". We do most of our grocery shopping here in rural northern Arkansas at our nearest Wal-Mart supercenter. It takes us an average of 45 minutes to do the shopping as I push the cart around the aisles. When I was at my worst, I would need to sit down on one of their benches several times to rest. Right after getting my Bi-V Pacemaker, I was able to do the shopping without needing one rest period for the first time in months. Since then, it has varied -- from a couple rests to none; the past month it has been none and I feel just fine entering the checkout lines. I hope my news encourages other CHF victims that at least sometimes improvement is possible.
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I have a little tale that a few may get a smile from: one of our bi-monthly shopping trips to the "big city" (Springfield, MO) and Sam's Club, I was about half way through our shopping when I started feeling pretty bad. My wife usually uses one of the riding carts, so I exchanged places with her for a few minutes while I rested on the riding cart seat. Another shopper came along and saw me, and wanted to call 911. We had quite a task convincing her that really I was OK and did not need the paramedics (yet). It is nice that others can be concerned about a total stranger. I must have looked pretty bad -- or as my wife said I looked like "death warmed over". (Our last trip there in late November was fine -- no rest stop needed.
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Happy New Year to All!