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Help! Newly Diagnosed CHF and Unsure Why
Hi, my mother was diagnosed with Congestive Heart Failure on Monday. The cardiologist told her she has a "weak heart" that is also enlarged. I am so confused by this. It came on very suddenly, she didn't feel well and was very fatigued and had a difficult time falling/staying asleep, along with some loss of appetite/mild anxiety. The next thing we knew, she had edema in her ankles. She went to the doctor right away (as she always has) and was diagnosed with CHF. She is a healthy, 64 year old woman who has always been active. She has never had high blood pressure or diabetes. She has never been overweight or even close to being overweight. She has never been a smoker. I am so lost on why she has been diagnosed with this and everything I read shows a grim outlook on this disease (5 years maximum life expectancy!). She had a procedure done yesterday to check for blockages, there were no blockages found. Her cardiologist has referred her to a specialist that is an "Advanced Heart Failure and Heart Transplant" doctor. She will be visiting that specialist next week. Does this mean my mother's heart failure is "advanced"? In the advanced stages? How can this be? We just found out she has heart failure. I am so confused and scared. Please help.
AHAModerator, December 31, 2020 12:22pm EST
Thank you for sharing your story with the community, this sounds like a very stressful time for you and your family. The specialist may be able to provide your mother with more information about her diagnosis and I can share resources with you about Heart Failure and how it can be managed. Please keep us updated on how your mother is doing!
The AHA Team
TC5580, December 31, 2020 2:15pm EST
For some reason when I click the link provided, it says "Error, Page Not Found".
JamesPL, January 1, 2021 10:27am EST
I am so sorry about your mother's diagnosis but please do not let this overwhelm you into a panic. It's important that you see what the specialist has to say about her condition and pending treatment. Remember that there are treatments available that have produced excellent results and that although the statistics may not seem encouraging to you, everyone is different. I can tell you from my own experience that the fact that your mother has taken care of herself bodes well for her. After my own diagnosis, I was told that because I had been active that I would fair better than most and that my recovery would be that much more effective. Also remember that the technology we have today has produced treatments and results that we could not achieve not that long ago. The best thing you can do is to be there for her as you both learn more about her diagnosis and treatment. Please take it one day at a time.
I wish you and your mother all the best! Please keep us updated.
mghd20, January 1, 2021 1:19pm EST
Thanks very much for sharing this with us. One year ago from this past November I had all the same symptoms you describe about your Mom and then some. For all appearances, it seemed my heart episode was sudden as well. The difference, I had Afib ( an irregular heartbeat ) which I knew about well over 10 years ago but didn't do anything about it. Worked in the construction field my whole life but really didn't pursue exercise. Anyway, the real point to all this, for me, is that I didn't treat my heart condition seriously all that time ago and it nearly killed me.
It's wonderful that you're reaching out as the family member. I've been connected to support groups for all of 2020 and have come across several family members reaching out for help and answers. You're exactly in the right place. I echo the hope for you to keep us updated.
Take care, mghd20
TC5580, January 1, 2021 8:07pm EST
Thank you so much for your support and personal stories, they are very helpful for me and I will be sure to keep everyone posted on my mom's condition. It means a lot to me that people have replied. Thank you again!
AHAModerator, January 2, 2021 1:42pm EST
Sorry that the link posted before didn't work. It seems to be working fine now.
Our thoughts are with you and your mother. Keep us updated.
AHA Support Team
Cwell, January 2, 2021 6:47pm EST
Be strong and learn all you can about your mother's condition. When I got my life vest I gave all the literature and info I had to my family..my parents, sisters and children. It's important that they are informed and know what to do in a situation. Support is important. The reality of this is that it's a sudden and dramatic life changer and Support is the most important part of that change..wishing your mother and you all the best. Remember keep the faith and the positive outlook. GOD BLESS
jerzeycate, January 3, 2021 7:27am EST
First thing to remember is Breathe....
I was in a similar situation 8 years ago. Sudden onset of what was diagnosed as asthmatic bronchitis that over the course fo severl weeks got progressively worse.
I'd had a full cardiac workup just 12 weeks earlier, because of family history and everything was great with my heart.
Suddenly I was in ICU with an Ejection Fraction of 11%, DCM, CHF, COPD, AFib, a Total AV Block ((you'll soon have a whole new vocabulary and talk about these things with both friends and medical professionals like it's old hand) and a prognosis of "3 months to live without an immediate transplant/." My cath was fine also. No blockages, No valve problems...Huh.. How could this be.
BTW it turned ou that my cardiac issues were the result of a viral infection (*** Sackie B aka Hand, Foot, and Mouth is a virus common , and benign,in the preschool set but not as rare as we think in adults). Turns out any virus can infiltrate the heart and create chaos. I n my case it decimated the cardiac electrical system leading to an avalanche of very serious, life threatening issues. All in a matter of 4 weeks.
The intial cardiologist told my husband to "Take her Home. Make her Comfortable. Get her affairs in Order." Huh? Yes, this was his treatment plan. HE was immediately Fired. The second Cardiologist, who remains my Primary Cardiologist to this day, had the same diagnosis, but a much different attitude. I also was referred to the Transplant Team. Turns out that is common. If they evaluate you early on you can be monitored and issues addressed early.
In my case I was not eligible for transplant and needed one to live.
So, I was a goner... That was 8 years ago this month.
I spent about 6 months in the hospital living in a "Life Vest" (new voocabulary word) unless I was in ICU. At 6 months they implanted an experimental complex cardiac device (another new vocabulary word). In my case it was an S CRT-D to buy us some more time. the very next morning I got out of bed and went into the bathroom. Big deal right. Well it was. You see it was the first time in 4 months I'd gotten out of bed on my own. And, I did it automatically. The Nurse found me crying on the toilet.
2 days later I dressed myself and Walked (with a special dispensation) out of the hospital on my own two feet.
While I had many complications, I have also had many miracles. Within 3 months my EF went from 11% to 30%. 18 months post device implantation, meds and lifestyle changes, my EF was at 55% where it remains to this day. My BNP, a screening tool for CHF initally 5000 on the 100 scale which is very, very, bad... went down to under 50 (aka CHF "Compensated" or in other terms "in remission with treatment".) COPD is gone. Most of the complications I developed--including kidney failure (dise effects of diuretics), Stroke (complications of Afib), Sudden Cardiac Arrest (requiring resuscitation 5 times by Medics and ER doctors)-also caused by AFib.... have been treated, resolved with no residual effects.
Tuesday I go into the hospital to have my device replaced as, in my case, the battery is close to caput and it operates the cardaic electrical system---24/7.
This in a woman who had a "3-month Expiration Date" back in January of 2013. (btw I was 54 when I developed sudden onset cardiac issues.
This is TMI But... I feel it important for you to know that Even in The Worst of Cases... There are plenty of treatments available and MOST IMPORTANT---There is hope.
While the statistics they give are grim and, btw also quite accurate, every day I make decisions and take actions so that I am not one of the 50% of those diagnosed who will die within 5 years. So I will be one of those who not only survives... But Thrives.
Please know that educating yourself is your greatest weapon. Your mother is responsible for her healthcare 98% of the time. To understand her condition, the treatments available, the resources at hand. To establish a working relationship with ALL of her healthcare providers. If there is someone she can't work with... get another . To develop a support system both within her friends and family and among those with similar disorders/diseases. There are plenty on Facebook. I can send you some links for both patients & caregivers if you'd like. These are very actuve groups where you willo find people online 24/7 .
The AHA has a wealth of information and resources avaible. Start at the beginning and read, absorb, read again. If they start talking "complex cardiac devices...aka pacemakes, ICDs, CRT-Ds there is a wonderful organization in the ** that has materials that go into detailed descriptions of the devices, the processes, ect . I like this guidebook because it is designed by patients and families for patients and families. I can also send you that link if you'd like. The AHA has an entire section devoted to working with your healthcare providers. There you will find questions to ask, how to seek out second opinions, patient responsibilities ect. There is also a great form to put on the fridge where you can jot down questions for the Docs as they come up then organize them prior to appointments.
Just let me know if you'd like me to post the direct links.
Your Mom has a new job. Becoming an Engaged, patient. Becoming part of the Participatory Medicine Movement. Pretty soon she, and the entire family, will have a whole new understanding and new level of respect for and working relationship with the healthcare industry.
In the beginning it will not just seem overwhelming, it will be overwhelming. Expect this and give yourself a brealk. This type of diagnosis is a lifelong journey.
Strange as it may sound right now, it may come to be the best thing that ever happened for the entire family...
I wish all of you the best as you head down this rocky road. Know that You Are Not Alone...
Let me know if you'd like direct links to the AHA sections and other information.
It's A Great Day To Be Alive...
Gmccanna, January 6, 2021 1:31am EST
In September of 2020 I had breathing problems and barely could walk 25 yards without having to sit or lay down to catch my breath. After many doctor visits I was diagnosed with having Congestive Heart Failure with an EF of 20-25%. I'm 47 years old, very fit, eat healthy, run half marathons, don't have high BP, have great cholesterol numbers, and my Heart Cath showed I was good and clear. So my question of why is similar as yours. Why and how could this happen. People said I was the perfect symbol of what one should be doing to stay heart healthy and to live a long life. I was shocked, so was my ego, lol. Like others mentioned, I had to breath and pause, then wait for things to fall in place. Answers will come as needed, keep researching and ask questions nicely and respectfully, listen to your heart and continue to read what makes sense to you. After I had let go of my panicked state of attitude, I calmed down and went to see my primary doctor again. Out of the blue he told me I had a virus that attacked my left ventricular (common like the previous poster mentioned). I haven't figured out what or how that part happened yet, but my heart tells me it's not in the "need" catagory, so I let it stand as it is for now. Also, I'm getting a second opinion, I found out this is critical for our recovery. The cardiologist has something greater to gain if we have surgery to implant a pacemaker, some assisted device, or transplant. Not saying he/she is actually seeking profit first, but it can be in their subconscious and humans are falibale. So for me, seeking a second opinion makes sense. I will receive my BVCID - pacemaker+defibrillator on January 11th, 2021. I'm praying it helps. Hang in there and keep reaching out to all of us, constantly keep us posted. Unity with similarity is one way we get through difficult times. :)
jerzeycate, January 8, 2021 6:17am EST
Please Note... There are Strict guidelines for when and how devices can be implanted. A physicians Profit has no place in these standards. Doctors cannot implant complex cardiac devices merely to enhance profits!!!