Medications
As with any illness, medication plays a big role in managing symptoms and disease progression for heart failure. Medications helped the women that we spoke with keep their symptoms in check and allowed them to sustain a level of wellbeing over time. Many of the participants had taken a great amount of time and care to educate themselves on the types of heart failure medications. They were highly knowledgeable about what they were taking, why, and the appropriate dosages – all which enabled them to self-manage their care, advocate for themselves, and to be a more active participant in the care team.
Our participants discussed commonly used medications and their purposes including diuretics, blood thinners, and beta blockers. They appreciated the benefits of the medications and how effectively medications worked to help them live comfortably but highlighted the importance of taking them as directed. Women also discussed the challenges of the medications used for heart failure (e.g. side effects, keeping track of pills, getting the right mix, costs), particularly if they had other health conditions. If providers disagreed over the choice of medication, this had an impact on the level of trust a woman might have in the plan of care.
Typical Heart Failure Medications
Women described taking a range of medications to manage the symptoms of heart failure. They included diuretics to reduce ‘water retention’ or edema, blood thinners to reduce risks of heart attacks etc. and ACE inhibitors and beta blockers to improve blood flow. The women we spoke to described their daily medication routines, demonstrating the type of daily demands required to follow their medical treatment plans.
Sharon2 describes her medication routine.
Transcript
I started a new drug a couple of months ago right after my micro clip surgery and I tried it before, and I got nervous and went off it. We decided to try it again because it’s a medication for diabetics, but it’s shown to have a positive impact on […]
Anne1 lists her medications and what they are for.
Transcript
I was prescribed perindopril, which is an ACE inhibitor and Sotolo which is a beta blocker. Both of these enhance the pumping power of my damaged heart. I’m on warfarin so that’s because I have AFIB so I’m not going to end up with a stroke. I have Lipitor to […]
Benefits of Medications
Several women that we spoke to talked about how effective medications were at keeping their symptoms under control allowing them to live their lives. Jennifer and Susan1 both commented about how medications keep their heart failure “stable” and allow them to function. Jennifer says, “I maxed out on the medication. But right now I’m functioning well enough and my heart failure is stable.” Some women spoke with gratitude and hope about the new medications being introduced that have the potential to improve their lives.
Lillian visualizes heart medications as 'hands' that support her heart.
Written testimony
So I sort of visualized my heart in some way…So you had to visualize and then draw a picture of something that you’ve visualized… So my picture is two hands. And they’re holding my heart. And there’s like this light beam coming out of my heart…. I feel like the medications are the hands that have supported my heart. This image is kind of like .. that angel image as well of being held by the angels. But it’s the drugs, like those drugs did support my heart.
Lynda talks about the hope that new medications bring.
Transcript
Every day there’s new medications coming out. And I think that people have to be hopeful cause I really believe that with some of those, those drugs, I’m on a drug that I inject every 15 days for cholesterol and my cardiologist said he thinks one day that stuff should […]
Lillian says 'those medications are a miracle.'
Transcript
When I was telling my friend of mine who lives in [city], she’s a GP there. She said, ‘Are you on Entresto?’ and I said, ‘Yes.’ And she’s like, ‘It’s a game changer.’ She’s seen patients who before would have been horrible, who have gotten better, like a miracle drug. […]
Barbara feels her medications are excellent.
Transcript
Most of the medication that I’m on for heart failure is diuretics and that just keeping the heart – the heart a little bit dryer. Its just keeping the water away from the heart, so used properly, they’re excellent medications. You just have to be really, really careful with them.
Challenges of Medications
Some participants spoke about the large quantity of medications that they must take daily in order to survive, while others spoke about the medication adjustments they had to make in order to incorporate their medication regime into their lives. Debbie says: “I’m on the Cadillac of drugs. Like there’s – like you wouldn’t believe the amount of prescriptions that I have to take a day – different times of day!”
Lillian says: “I had been at that point, kind of a little bit resentful about all the medication I’m taking. Its really hard to remember to take your medications. I have a daily pillbox now like I’m an old lady.”
Naomi speaks about how her life has changed since having to take many pills a day.
Transcript
I think one of the biggest adjustments is that I carry my pill box with me practically everywhere and I have it right here, its pill fill up day so its empty right now but I’ve been using this every single day for almost the past year…
Kim is grateful for the medications but notes there are also challenges.
Transcript
Like I mean if I’m on like these nine pills for the rest of my life I don’t care as long as they keep me from not dying. So, the thing about pills though, like, I’ve moved them into my routine, my daily routine, right? But and I have to […]
Deb spoke about the research aspect of medications and the limits around clinical trials.
Transcript
I learned that all heart medicines – and I don’t know if it’s up till now but at that time nothing had been tested on women, only tested on men. No heart medications were ever tested on women, only men. I think they’ve changed a bit of that protocol. I […]
Side Effects
Several women spoke about the positive benefits of medications in terms of managing symptoms, keeping heart failure in check, and allowing them to live a somewhat normal life, while others talked about medication side effects and lifestyle modifications that needed to be made to accommodate these side effects. Participants spoke about the challenges some of these medications can create for day to day living.
Deb talks about the impact of taking medications for a long time.
Written testimony
But I have entered into the first stage of kidney failure, and I do believe it’s from 23 years of medications. I think it’s just a thing that’s going to happen. If you take that many medications for that mean years, it’s inevitable.
Jenny describes how she felt when prescribed beta blockers.
Transcript
And they put me on beta blockers. I absolutely hate beta blockers. I can’t tolerate them. Feel like a zombie, they hit me like a freight train. I get so uncomfortable.
Shelly talks about the challenges with having to take diuretics.
Transcript
So it makes it difficult to go out to restaurants. Like you know your – everyone wants to go out to eat, or to do this, or do that and you just have to watch what you’re doing because and as well your on water pills. So, when you’re on […]
Other Medication Issues
Participants also spoke of developing heart damage and heart failure following the use of cancer treatment medications (i.e. chemotherapy). Women were aware of the risk of heart damage complications from the cancer treatment, but some experienced these side effects very quickly whereas others did not notice heart changes until years after cancer treatments.
Maya says the treatment she received for childhood cancer may have caused her heart failure.
Transcript
Yeah, so I am a childhood cancer survivor. I was diagnosed with cancer at 15 months old and that was in my kidney and then I relapsed in my liver and for that I was treated with surgery and radiation and chemotherapy and one of the chemotherapy drugs was Adriamycin […]
Dido developed heart failure years after aggressive chemotherapy treatment for breast cancer.
Transcript
I was diagnosed with breast cancer 9 years ago and that went well, according to how well breast cancer can possibly go, I have 2 mastectomies and I did 4 rounds of chemotherapy. The cancer that I had was quite small but pretty significant and I took the decision under […]
Costs
While some participants were fortunate to have private insurance that covered the cost of many of their medications not covered by public plans, others did not. Participants sometimes had to decide what medications they were going to take based on price and other priorities. Using research and government programs, some women were able to afford costly drugs. See our page on the Impact on Work, School, and Finances.
Susan2 says social workers help her access programs to pay for drugs.
Transcript
Right now, my retirement fund though runs out about August or September. So I have to carry my medications to the end of the year. But again, social workers and people have helped to say, why don’t you try over here. There’s a program over here, and you know, to […]
Anne1 describes how a research nurse helped her get funding to pay for her medication.
Transcript
And I was involved with a study at the hospital concerning a ferritin infusion, that my ferritin levels were low, so I was on a double-blind placebo study for that. And the nurse who was overseeing that study asked – she knew I was on Entresto – but she asked, […]