Diagnosed with heart failure on 12/14/16. What can I expect now?
January 16, 2017 1:25 PM   Subscribe

I am a 36 yo female. Was diagnosed with atypical severe congestive heart failure one month ago. My question is: what now?

I had had trouble breathing for six months and was only diagnosed because I whined a lot and finally got an echo. My ejection fraction was 10%. I was in the hospital for 5 days, and left with a lot of meds and a life vest. Doctor appts since discharge have been few and far between, and not very helpful. I am on the wait list for cardiac rehab, but frankly may not be able to take that much unpaid time from work every week.

I am doing MUCH BETTER and can do 20 minutes on a tread mill at 1.5 mph now which is worlds from where I was. I am doing well with sodium and okay with fluid restriction. My question is: what now?

What is my life going to be like for the time I have left? What other steps can I take to extend my quality and length of life? What can I do to impact the negligible amount of info there is out there about heart disease in women and or young people?
posted by misanthropicsarah to Health & Fitness (16 answers total) 9 users marked this as a favorite
You need to find a new doctor who is actually helpful. That should be your number one priority right now. Best of luck.
posted by sockermom at 1:37 PM on January 16, 2017 [2 favorites]

really i am just looking for anecdotes about life with heart failure, hopefully from someone near-ish my demographic. i am seeing 3 doctors concurrently about this heart failure issue of mine. i know all the mechanics of why my heart is failing, what each drug does, all the medical stuff.
posted by misanthropicsarah at 1:41 PM on January 16, 2017 [6 favorites]

My dad (who just turned 70 a few days ago!) was in the hospital for a few days with heart failure back in fall 2009. All three of his brothers have experienced similar and gone for hospital stays to deal with what is apparently our genetic problem. All three are still alive and seemingly carrying on as normal.

The main changes in my dad's life have been more visits to the doctor--both his GP and cardiologist--a regimen of several pills (including, I think, Warfarin) every day, and an eagle-eyed monitoring of his salt intake and certain leafy greens. He is still obese, however, eating junk, and not very active. I'm concerned about this but he swears his doctor says it's okay. Who knows. But he's going to work, staying up late watching movies, and playing cards with his friends like before.

What I wish he'd do is nix the junk food and overeating and really REALLY pay attention to his salt intake, not just give it lip service. And regular exercise, whatever intensity is recommended by the doctor.

My dad's mom died from this in her 40s, when it was even more poorly understood in women than it is today. I will probably be in this position if I'm not killed by something else first. As a woman, I'm thankful for your openness about what's going on.
posted by witchen at 2:14 PM on January 16, 2017

Dee Williams got started in the tiny house world when she had a heart attack at 40. She doesn't have congestive heart failure, so it's not quite the same (feel free to disregard), however I thought I'd go ahead and post the link because it looked like some of the comments had anecdotes about various heart issues in younger people (the first comment I read was about someone's mother who was diagnosed with congestive heart failure decades ago). More about her here.
posted by jrobin276 at 3:14 PM on January 16, 2017

My mom was diagnosed with CHF in 2010. At 54, she was older than you are, so feel free to ignore me.

Anyway, after exhausting local options, she sought a second opinion from the Mayo Clinic and was advised to have a mitral valve replacement, which she declined. It took a long time - like a year, at least - to get her med combo just right. Specifically, she struggled a LOT with critically low potassium, which is both incredibly unpleasant and life-threatening. She was hospitalized a few times per year for cardiac monitoring and IV potassium supplementation. She also was admitted to Mayo twice per year for a full workup until she stabilized. Now she just goes annually. Her cardiologist specializes in heart disease in women.

She was finally put on the right combination of medication, including potassium-sparing diuretics. I think the most important thing she did was to remain active in whatever ways she could. Now that she is doing better, she hikes, kayaks, rides horses, and can leave me in her dust while cross-country skiing. She also (claims to have) stopped drinking, which has helped a great deal. When she was at her most ill, she hovered around 85 lbs, edema included, but now she is a healthy weight and looks MUCH better.

Don't be afraid to seek another opinion! Don't stop looking until you find the doctor who is right for you. Stay as active as you and your doctor feel is realistic. Don't hesitate to try different meds until you find the right combination. CHF is scary, but it isn't an automatic death sentence. It will probably take some trial and error before you find a efficacious treatment, and you might feel worse before you feel better, but don't lose hope. This internet stranger is rooting for you!
posted by easy, lucky, free at 3:23 PM on January 16, 2017 [7 favorites]

I really don't mean to be scary with this, so please forgive me that this is from a palliative care website, but it's the best pictorial explanation I am familiar with detailing the course of congestive heart failure. It's the type of medical problem that typically tends to flare up from time to time, and each time it flares up the baseline state of health is a little bit worse than it was before, so over time it worsens until death - but the "over time" part can last many years depending on the underlying cause, how good a person is at taking care of it and what their other medical issues are.

Aside from that, the main thing I want to add is that most of the anecdotes above are not wholly relevant to you, because most older people who have heart failure have it for completely different reasons than young people, and have other medical problems that significantly impact how it can be managed (like kidney problems and lung problems). It sounds like it's unclear (idiopathic) why you have heart failure? I think you'd be best off looking at the experiences of young people who have CHF due to myocarditis. It's a pretty rare problem so it may not be likely that anyone here has that experience or knows people who have. Possibly peripartum/postpartum cardiomyopathy, although that tends to have a high rate of spontaneous recovery, which most of the other types of heart failure don't.

Another reason that your situation might be very different is that most old people with heart failure are not candidates for heart transplants - but you might be at some point, and would have to find out more from your cardiologist about the possibility of that, since it would certainly change the potential trajectory of your disease.
posted by treehorn+bunny at 10:57 PM on January 16, 2017 [3 favorites]

Upon finding a much better cardiologist, please discuss with him/her your family history, if you know it. HF at that age is a possible indicator of a possible hereditary condition. If there's anyone else in your family with early sudden death, early cardiac arrest (<5>
I'd also look into program available from your local hospital. At the hospital I work at, there are both programs/seminars/monthly meetings for women with heart conditions and children with heart conditions. These aren't necessarily "medical" in nature, but can be excellent resources of information.

Good luck.
posted by kuanes at 3:58 AM on January 17, 2017

Hey there! Welcome to the club. I'm the same age as you, diagnosed with heart failure at 24 (EF ~12%), did the medication/defibrillator/rehab shuffle for a decade or so. Now I'm trying to get listed for a heart transplant. I had a similar course as you trying to get diagnosed, being told I was stressed out or had a URI or asthma until finally I was nearly dead.
First off, you need to get better doctors. I had pretty crappy doctors coming out of the hospital the first time -- one of them even told me, when I asked about the fact that I would sometimes gray out during class, not to bother calling "unless you hit the ground". Which, of course, could be too late. Within a few months I had tracked down the heart failure clinic in town (at the time the only one in my city) and had gotten in as a patient via the backdoor -- they weren't officially taking new patients at the time. If you find a clinic that comes highly recommended but they're not accepting new patients, email the doctor's PA with your info. You're still young enough that your case will be interesting and may get you bumped to the head of the line.
Also, evaluate your insurance situation carefully, as we are in the last couple of weeks of open enrollment. It sounds like you may already have coverage through your job, but it may be worth paying for a private policy if it'll get you in to see the right doctors. I'm on Medicaid but also have a private policy because the limitations on Medicaid are so stringent -- the hospital I want to use doesn't take it, they won't cover all my meds, etc.
It sounds like you're doing great with exercise! I do still recommend rehab if you can hack it -- my place had early morning sessions as well as lunchtime-ish so there were some people with fulltime jobs who could make it work. But even if you can't go on a regular basis, they may be able to help you develop an exercise plan you can follow on your own.
Right now my situation's kind of rough. The virus that caused my disease left a big scar that has led to electrical abnormalities and, in the past few years, lots of ventricular tachycardia/ventricular fibrillation. Thank God I got a defibrillator implanted the year after my diagnosis; my first device never ever fired, but the replacement one after the first one's battery wore down has earned its keep in my chest several times over. As I said, I'm now being evaluated for transplant and hope to have a shiny new heart in my chest by summertime if all goes well, but I had a solid decade during which heart failure was an inconvenience but not a disaster. I still graduated from law school, though I took a year longer than usual; I traveled by myself to Europe multiple times; I started my own law firm. I was definitely hampered by heart failure but I kept living my life.
And now, looking at transplant, I fully expect to live something close to a normal life expectancy. I basically have refused to die on a few occasions thus far and plan to continue doing that for a good long time. There are lots of people wandering around with transplant hearts 20-30 years out; I want to be one of those, and by then who knows what they'll have in store? From what you've said you have not been handed a death sentence. It's a terrifying diagnosis, especially when you're first getting settled in, but you can do this.

A few scattered thoughts:
1) Do not get pregnant. DO NOT. When I was first recovering (EF got as high as mid-30s, they thought I might be able to just coast there indefinitely) I asked my doctors, fully expecting them to say pregnancy was out of the question. No one would ever tell me that, and would offer that it might not be the best idea but they'd certainly support me through it if that's what I wanted to do. I never did because it never felt safe enough, and I'm damn glad now, because it makes the transplant easier. When you are pregnant -- even if you have a late abortion -- you end up with antibodies because of the fetal cells in your bloodstream. That makes transplant matching harder. Plus there's the whole peripartum cardiomyopathy etc. which renders it all just bad bad news for someone with an already weakened heart.

2) When you get a decent doctor ask about LVAD as a bridge to recovery. It's a fairly new application of a known technology. I got a VAD a year ago and my heart appears to have strengthened some from having a bit of rest. It's too late for me as an actual solution, because I've got more than a decade being this sick, but it's been shown to aid recovery in some people when it's tried early on. Also, if I'm recalling correctly, about a third of people spontaneously make a pretty much full recovery within the first year. I obviously wasn't one of those; I hope your luck is better.

3) I'm a little dubious about the sodium thing. A fairly small percentage of people are actually sodium sensitive. More people, it turns out, are carb sensitive when it comes to retaining fluid. I've definitely had the experience of going low carb and it having a MASSIVE diuretic effect, whereas I'm fairly sodium insensitive. That being said, I have developed lower sodium recipes and have lost my taste for really high sodium foods, such that they now burn my mouth. I'm not on any diuretics on a regular basis and maintain fluid balance reasonably well. I do still eat normal foods, and they will pry my pizza from my cold dead hands.

4) Are they talking about implanting a defib? As stated above, I'm a big fan of mine, even though I really really didn't want it at first. If you get one, you can ask them to put it under the muscle so it'll be less visible. I also got mine on my non-dominant side so my good arm wouldn't be out of commission while I healed. The doctors always think I'm a little weird when I pop up with a request like that, but they always humor me and eventually think it was really smart. Don't be like the woman I saw at clinic who was given a Life Vest but found it too heavy, so she didn't wear it at home and would wear it out of the house but only after taking the batteries out. I wish I'd had a camera when I told the doc about what I had overheard in the waiting room that day.

5) If they're up-titrating you on beta blockers be careful when you stand up. I would always forget that I'd recently bumped my dosage and get halfway across the room before I'd start to go gray around the edges and have to hang on to a wall or some furniture to keep from falling. On the other hand, I was always pushing them to bump my dosage as fast as possible because I was relatively young and healthy compared to their normal patients, so I didn't need the slow ramp up that they were accustomed to doing.

6) If you can eventually manage your fluid balance without needing diuretics, your kidneys will thank you for it. It's more important in the immediate term to make sure you're getting enough fluid off, but the biggest thing my GP impressed upon me early in my course of heart failure was that we were trying to hold the line on all other organ systems. No undue stress on kidneys, liver, lungs, etc., because that can start the cascade. Fortunately it's not a huge loss for me, but I don't drink (max a glass of champagne at a wedding or once a year a couple of drinks at a girls' weekend with friends), don't smoke, don't drink caffeine, etc., in part because of that.

7) Get screened for sleep apnea. Apnea can be an incredible stressor on the heart, and heart failure can cause a particular kind of apnea where your body just forgets to breath. It's great. I backpacked across Scotland with my CPAP because I can't be without it.

8) Get an IUD. I mean, I'm sure there are other decent birth control options but you need to be on a really really good one, and hormonal BC can be a problem for women with heart disease. I've had a Mirena and it's been great. That level of hormone acting locally doesn't seem to cause the problems of a pill.

Now, I'm not gonna lie. I have been slowed down dramatically by my illness and I can get pretty down on myself when I start comparing my accomplishments to my friends who have been healthy all this time. It sucks to be living with my parents and on disability waiting for a heart while they're buying houses and having babies. I really hope that, since I've got a 12 year head start on you, the newer treatments will help you make a better recovery so that this is just a blip in your history. But if not, you can still live a good, full life. I'm making plans for working and having kids after the transplant (still no pregnancies for me, though). There's still a ton you can do.

As far as the lack of information, I'm pretty sure it's because we're unicorns. There are relatively few patients our age with non-peripartum, non-chemo-related cardiomyopathies. I frequently have to pretty forcibly remind doctors that my expectations are different from their standard patients'. The number of times I've been told "you've got enough horsepower to do whatever you want to do" or "go out and live your life!" only to have them backpedal when I ask, "So, my friends are going rockclimbing next weekend..." "Okay, can I play on my journal's softball team?" The vast majority of heart failure patients are ischemic, older, and otherwise sick. I'm not sure what to do to make information about people like us more widely available, but I would love to see it happen. I'm sure you've already heard and will continue to hear it over and over again, but you have to be your own advocate. You know your body best. If something's wrong, push and push and push until someone listens to you. Especially when you fall outside the norms like us, it's easy to get overlooked. Or, as my doctor's mentor once told him, "Never trust the young ones. They're tricky."

I could literally talk for days on this subject, but will wrap it up here for now. Please feel free to contact me any time via email or memail. If you want to add me on Facebook I can add you to a group of young heart failure patients a friend of mine started. It's a shitty thing to qualify for membership in the club, but the people in it are frequently pretty great.
posted by katemonster at 4:15 AM on January 17, 2017 [34 favorites]

Oh, specifically about doctor's appointments: when I first started with the heart failure clinic, I had weekly appointments with the doctor. Then we stretched that to two weeks, then three, etc. This early on in the process I was there All. The. Time. You should not be "few and far between".
posted by katemonster at 4:17 AM on January 17, 2017 [3 favorites]

My Grandmother had heart failure when she was in her late 50's. It was a little worrying at first, but she got a handle on it and did extremely well. She followed the diets of the day, took her meds and had a very sunny outlook. She lived to 98 and had good health all those years. I hope you do as well.
posted by james33 at 4:38 AM on January 17, 2017 [1 favorite]

I have heard excellent things about the Chronic Babe Forum. You have to be a member to view or search the forum, so I don't know what's on there about CHF, but it'd be worth a look; their tagline is "Helping you craft an incredible life beyond chronic illness!"
posted by carrioncomfort at 7:42 AM on January 17, 2017

You can have a big impact on your quality of life by carefully titrating your medicines, your fluid intake, your salt intake, and also other "lifestyle" factors (for example, if you smoke cigarettes, quitting will make a huge difference in your daily comfort. If you are physically inactive, gently and slowly increasing your activity will help you to feel more energy and a sense of adequate air).

For this reason, I think it is important not to find a new doctor necessarily, but to find a clinic where you can work on this stuff with some kind of partner, ideally a nurse or nurse case manager that specializes in heart failure.

Best to you! I really believe that over time you can make this a thing you can live with in a way that feels like you have a reasonable quality of life.
posted by latkes at 8:15 AM on January 17, 2017

If you are in the US & working, read up on FMLA so you are well-versed in protected leave and look up your diagnosis on the Job Accommodation Network website to get some ideas about how others work with your same diagnosis. We are pulling for a good quality of life for you!
posted by childofTethys at 11:50 AM on January 17, 2017

My issues with CHF (right now) mostly involve fine-tuning medications. For example Lisinopril, for me, affects my liver function, so I need take a slightly lower dosage than my cardio doc would prefer. This means having my blood chemistry checked every couple of weeks.

Fluid and salt monitoring are my two main issues. I have a 30% ejection fraction, and even moderate exercise leaves me a little winded. Also, I am 71 years old. Gasping is always a bit worrisome for me, on account of, you know, the ambulance ride and all that. I have another issue with my heart, requiring a pacemaker--I guess you could say that my heart issues are both hydraulic and electrical.

It's good that you can remain fairly active. Regular checkups are a great idea. Stress is a bad thing, as is high blood pressure. I'm guessing your cardio docs have counseled you about this. I keep an OMRON pressure cuff handy, and monitor my blood pressure regularly--I started doing this after I experienced the total block that led to the installation of the pacemaker.

I've gotten past that edgy feeling of existential uncertainty that followed me around right after these problems developed. Enjoy the day is not a hollow bromide, considering that stress is a valid concern.

Anyhow, keep track of your meds, ans get your blood chemistry checked regularly.

Best of luck.
posted by mule98J at 12:54 PM on January 17, 2017

Alas my company has only 19 employees so no FMLA.

thank you everyone esp katemonster. I will be messaging you! I was in a low place when i posted and needed to know i wasnt alone.
posted by misanthropicsarah at 1:29 PM on January 17, 2017

Katemonster has the best advice: LVAD ASAP
posted by wherever, whatever at 4:03 AM on January 20, 2017

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